DizzyGirls

Like WinterSown, my daughter takes the diazepam for her vertigo. How low we can go all depends on her vertigo. It's a very scary thing to go off of the one thing that made all the difference in the world as far as her vertigo. But we will very slowly keep plugging along. My daughter has MCAS as well, and when her vertigo is bad, sometimes she will take an extra Benedryl instead of increasing her diazepam. With MCAS, we find that her body really likes the extra antihistamines. Helps to keep it calm. She had an upperGI endoscopy where they also did some motility testing while they were there. The second medicine that they used to stimulate her small intestines gave her a bad reaction. Face got all blotchy, throat was starting to swell... nurse ran and got some Benedryl and shot it through her IV. In about a minute, all was well again. Kind of scary, though.

Tapering my oldest daughter off of diazepam. Going super slow. Right now POTS symptoms aren't being affected by it.

I think you are right about the fact that alcohol depresses the central nervous system, and, therefore, giving you some positive results. My daughters have that kind of effect with anesthesia. My oldest has a procedure coming up that she will need anesthesia for, so she is looking forward to it because it might bring some of her symptoms back to baseline and give her a little respite until they kick in again a few days later.

I was just doing some reading on pyridostigmine/Mestinon. I think my youngest daughter might have Lambert Eaton Myasthenic Syndrome (LEMS) and they use that medicine sometimes to treat it. However, I don't think she would be able to take it because there seems to be the general consensus that it is hard on the GI tract, already has problems with that. I'm not sure it's LEMS, but it's something like it if it's not. With LEMS, as opposed to Myasthenia Gravis, you develop Dysautonomia. I don't have any experience with it, but am curious what you find out!

I would stay put. With vertigo thrown into the mix with POTS, you should stay down for a couple of days, at least. You can't push through vertigo. Believe me, my girls have tried. It has to settle on its own.

My daughter had major surgery about 5 months ago (multiple spinal fusion) and she had to go to a rehab facility before going home. This place was great! The occupational therapist came in about 7 a.m. every morning and filled up a small tub with some water and poured bath wash that you don't have to rinse off in the water. She sat in her bed and was able to wash as much of herself as she could and then the OT or I would help her finish. It doesn't do her hair, but dry shampoo works well for that. Even though you aren't in the hospital, it might be easier to grab a tub of water and crawl back in bed, then you can rest and warm up after without having to move. But, slide the tub aside, you wouldn't want an unwanted bath!! Hope you can get a handle on your symptoms soon!

This happens to my daughter to some degree when she is waking up from sleep. I think her's is more of a sleep paralysis, but she's got a few of the above symptoms as well. She also suffers a lot from brain fog.

No, but I have heard about such. Are you referring to SLE or the Hughes Syndrome aspect of Lupus? My daughter has EDS as a cause of her Dysautonomia, but I highly suspect she has Lupus also, so which one is causing the Dysautonomia EDS or Lupus is anyone guess at this point I think.

I will third Chuck E Cheese!! My worst nightmare also!!!! My daughter was on topiramate a while back to see if it would help her migraines, which are vertiginous migraines. It did nothing for the migraines or the vertigo. She is severely bothered by overstimulation, which makes all of her symptoms worse. When her vertigo first started, it was linked to her migraines and not to overstimulation. Now, I would say it has a lot to do with overstimulation. Her pain doc is trying to get her off her benzo, too. It's really the only thing that controls the vertigo and overstimulation. Her beta blocker has done nothing for the overstimulation, but does work well for her tachycardia. She takes propranolol. Thank you for doing this research! I always feel like we need to keep researching dysautonomia as WE as patients seem to be the only ones who understand it. I'll throw something else in the mix, if you don't mind. But, do you have any trouble with the switch from sympathetic to parasympathetic at night when you are trying to settle down? It's odd. My daughter had a huge spinal fusion surgery at the end of July. Her neurosurgeon had said for a normal person, it would take about 6 months to recover from something of this magnitude, but someone with Ehlers Danlos and Dysautonomia, it would take anywhere from 12-18 months. This brings me to our situation. When my daughter heads to her bedroom at night, as soon as we dim the lights and try to calm things, a huge wave of nerve pain overtakes her body causing horrible muscle spasms, sometimes tremors, too. I think it is the shift from sympathetic to parasympathetic. Sometimes it only lasts 15 minutes, sometimes 30 minutes to an hour. Ever experience anything like this?

Yes! I have two daughters with Dysautonomia (POTS as well as other forms) and Ehlers Danlos Syndrome. My youngest was having a real problem with anxiety and we mentioned it to her OB/GYN and she put her on the pill (Microgestin 1/20) and she has done sooooo much better. She decided to run each month back to back, no period in between because it was really causing problems. She's been on those pills for almost 2 years now (she's 19). It's been a lifesaver! My other daughter gets the depo provera injections every 10 weeks. She has real migraine problems, so she can't take the pills, but the shots are wonderful as well. She doesn't have anxiety, though.

My daughter couldn't take midodrine, caused too many headaches. Has a lot of migraine trouble to start with.

I completely agree with KiminOrlando. It's amazing what kind of symptoms you can have from a compressed spinal cord or brain stem. My daughter speaks from experience. Please find a qualified neurosurgeon to assess your neck. You definitely need a full spinal MRI, with flexion/extension views, and would have the brain done at the same time. That's what our neurosurgeon ordered for my daughter, with the exception of the flexion/extension views, as she could no longer bend her neck like that. He had to reconstruct the curve of her neck while he did her C3-T4 fusion. To get the most accurate results for possible Chiari, you would need to have the brain/cervical done at a facility that has an upright MRI machine. Make sure they check for craniocervical instability as well. If you have a Chiari and they do surgery to repair it, but do not check to see if there is any craniocervical instability, there is a high chance that the Chiari surgery will fail. The "click" in your neck sounds like you have some upper cervical issues. Rotation, maybe, cervical instability... Best wishes to you!

I have dreams that I can't breathe, too! I truly think that I cannot breathe, because when I wake up, I'm really short of breath. When this starts happening, I start using my Flovent inhaler. It helps and I quit having those dreams. I'm mildly asthmatic, as well.

It was a neurosurgeon that diagnosed my daughter. Actually I diagnosed her, then found a neurosurgeon to support the diagnosis. So far, we have not had good luck with neurologists.

My daughter has these, but I can't say if her bp or heart rate goes up when this happens as I've never had the wherewithal to remember to take her heart rate when this is happening! Good for you, though! You sound like you're a step ahead. My daughter's usually happen due to a cervical issue she has with her neck. She's got Ehlers Danlos and is 4 months post op for spinal fusion of C3-T4. I'm thinking that C1 and C2 are acting up and have become more unstable since the surgery. When she bent her head down last night, it sent off a whole slew of symptoms. She was semi-conscious, became semi-paralyzed in her upper extremities, and had underlying nerve pain. Scary stuff! Usually at night, she has an onset of nerve pain which triggers a lot of tremors in her head, face, arms, hands, and, if we don't catch it soon enough, can go down to her legs. Before her fusion, her whole body would freeze up, just like you and she would feel like she had been hit by a truck the next day. This was because her cervical/thoracic instability was pulling directly on her spinal cord. Do you know if you have any vertebral instabilities? Do you have EDS? Just curious. The next time this happens, try putting a warm rice sock or the like around the back of your neck. See if it works. Don't put it around front, though, your corotid arteries are there. Hope this helps!

I would look into the Salagen, even if the timing isn't exact. But, I agree with TCP, when you mentioned brain stem compression and the neurosurgeon said CCI , sounds like it might be progressing. So sorry you are feeling bad.

We went to Stanford Autonomic Clinic. Dr. Jaradeh is actually from Mayo in Rochester.

It sounds like it could possibly be a case of craniocervical instability. My daughters have EDS also and my oldest just had a multiple spinal fusion from C3-T4. Even though hers wasn't craniocervical instability (she had cervicothoracic issues), the fact that there was pulling on her spinal cord gave her the same symptoms as one who has CCI. I would encourage you to read any information you can find on Dr. Fraser Henderson. He's the top US neurosurgeon for CCI. He's EDS and POTS savvy, too. You don't necessarily have to go to him, just read his articles, they are very enlightening. Also, the vomiting part and the other things the doctor told you about Chiari are not correct. Most people don't have those symptoms. They most likely COULD, but as you have found already, there is a whole lot more to it. I hope you can get to the bottom of this soon. It's hard to watch our kids suffer!

When my daughter's spinal fluid pressure builds up too much, she hears her heartbeat in her ear. Her vertigo also gets significantly worse. She had a lumbar puncture on Monday to have them take some of her spinal fluid out. It helps.

Thinking outside the box here.... My oldest has been having at least 2 migraines a day for the past couple of weeks. We have come to the conclusion that she has pseudotumor cerebri. It's a build up of too much spinal fluid. It causes real skull-cracking migraines. The last time this happened, she had a lumbar puncture to release the fluid and her migraines went away for weeks. They came back some, but not near like they are now.

I have a 21-year-old and a 19-year-old and I've always had to advocate for them. There is not a doctor out there that took them seriously until we finally got to Stanford's Autonomic Clinic. But, before that, we had a neurologist and he finally exclaimed one visit "YOU FRUSTRATE ME!!" I could have strangled him. I frustrated him???!!! How does he think WE felt? You have to keep pursuing on. I've been advocating for my daughters for the past 21 years. Yes, it gets old, but, as the old saying goes, "if you want something done right, do it yourself." So, I diagnose them myself and then find a doctor that specializes in treating whatever the problem is at the time. It stinks that's the way it has to be, but, you'll be better and smarter for it. Hang in there. Life is tough, but we can't give up. It's not an option. Some of the best places to find out good information are the forums. People tell it like it is, not like a textbook. But, you have to keep on reading the medical journal articles, too. You'll pick up on the "medicalese" the more you read.

I can't take the triptan drugs, they do nothing for me. I use an old drug, Fioracet. It works wonders! I can actually function without having to go into a dark room. I had gotten 7 in about a 3 day period and the doctor tried the med on me. It was that magic pill! I don't think it's a narcotic either.

The daughter I'm referring to in this post had high saturation oxygen for a pneumomediastinum (blister in her lung). People with EDS can get these. We had gone to our local ER and they had given her some oxygen. The ER doc on duty said that they see this in people with connective tissue disorders, had anyone ever suggested that she had one. Of course I said that's what they were looking into for her. The oxygen made her feel really good. It was for 30 minutes for 4 days and darned if my memory forgot what the oxygen level was. Well, anyway, the oxygen helped get rid of the gas that had formed outside her lung and into her upper body and neck. Her skin was really crinkly! Good idea!!

Going to our neurosurgeon tomorrow and am going to tell him what happened. I would hope that it will narrow some things down for him. The further away from this she gets, the worse she's getting again, too. There is such a thing as a happy medium, too. My oldest daughter just had multiple spinal fusion surgery (9 to be exact) and after 8 hours of surgery, her POTS was a bit of a problem for the next few days, but after that, she was enjoying quite a few days, also, with a calmed autonomic system.

Some high blood pressure is sensitive to salt intake and some is not. So, eating a lot of salt wouldn't affect that particular type. Hope yours isn't affected!