WinterSown

I saw my EP (Electro Physiology Cardiologist) today. Apparently my diastolic suddenly dropping into the 40s is not what freaks him out, it's my systolic being in the 70s and 80s, he says those are the numbers that send me reeling to my bed. Got my meds cut yet again, this time amlodipine, and go back in six weeks for more tweaking. It will be a double. I get to see my cardiologist first, then him an hour later. I adore them both and fondly think of them as Thing One and Thing Two. I told Thing Two, the EP, that I am in the process of getting another dx for Drop Attacks but because of Vestibular PT I don't drop. Which is good, I'm not smash-facing on the floor. Diagnosis of the day: "Trudi, your ANS is wonky." I agree, win.

I am happy for you both. How wonderful to get assisted by a caring and knowledgable doctor. I hope her symptoms are soon manageable and she is feeling better.

18 minutes ago, angelloz said:

Due to migraines I barely eat any variety at all. Rice, potatoes, cooked vegetables, oatmeal with cooked blueberries. A bit of cottage cheese and chicken, that's it.   

That's me. Basic plain white carbs, chicken takes a bit of a time to digest but I can do eggs fine. One of my fave lunches is cottage cheese with pineapple. I buy fresh cubes of pineapple from the cut-up produce section of the grocery, bring them home and cook them using the fresh veggie setting in the microwave. They taste like canned pineapple but sooooo much better. Easy.

I have a paraesophageal hernia and GI motility issues. Gastritis is often and usually easily controlled with change of diet, you may also be advised to temporarily raise the head of your bed to reduce reflux while you  sleep. I currently take omeprazole once a day. My cardiologist advised I eat smaller meals about six times a day and try to have some kefir or yogurt a few times daily for probiotics cultures. Also, to assist with digestion and passage, the proctologist told me to cook everything--no raw foods--and then to slowly reintroduce them into my diet. After a couple of years I can eat some melon and iceberg  lettuce, otherwise it's all cooked. I now also, on my own, have learned to avoid foods labeled rustic or artisanal because they are simply food with bigger particles. I wish you well and a speedy return to a happier tummy. Gastritis is very controllable--with management your stomach and digestion problems should settle down quickly. I do want to add one thing, my own experience is that GI management is unforgiving. If you eat or drink what you are not supposed to eat or drink there will be a result that is predictable. 

I have to call the doctors office tomorrow to schedule and I will find out more. If they take the insurance I'll take the test. They are looking for a reason for why I trip as often as I do. They have to take readings from a very small area in my ear--if there is occlusion or disruption of airflow--or something like that, I will probably remember more tomorrow. The doctor is very nice, she understands dysautonomias. She did mention a couple of times during the visit that they even they find a cause there probably is nothing more can be done. 

I have parts of something called Drop Attacks, which is fainting while you are conscious. Last year I did Vestibular PT for vertigo which made me physically strong enough to support my weight if I felt like I was going to fall. So, with the Drop Attacks, I don't drop. I know that PT has saved me from tripping on a curb and falling into the street, I have not fallen down the stairs more than a few times, and I have self-corrected when tripping over an assortment of pets.  I got a new script for Vestibular PT today. I got a new script for more Pelvic Floor PT last week from DocProc too. I don't know how that will be combined but I expect to sleep well afterwards and get a better bod for my efforts. Potsie Hotsie, lol. 

It's a recent type of balance testing. I have a history of tripping and numbing in my legs There is very little info available on this test, I just only heard of it today and I've just started reviewing it. Most of what is online are descriptions of the test and how to give it--a lot of information for technicians. https://en.wikipedia.org/wiki/Vestibular_evoked_myogenic_potential

Has anyone had VEMP testing, and if so, were they able to help lessen your symptoms?

21 hours ago, vepa said:

Obviously, I wouldn't share anyone's personal or medical information without their consent. The people who participate are doing so of their own choice and have complete control over how much they want to share. A few people are already expressing interest so I'm pretty excited about it. 

I look forward to seeing this get started, it's a wonderful idea.

I have vertigo. I sometimes feel like I'm walking on a ship listing to one side, it happens a lot when I am walking the dogs and am close to the end of the walk; I am tired then and more prone to sensations. One of my triggers is lifting my face upwards while turning my head to the right--I do this practically every time I get out of my computer chair but I've learned to stand straight and and minimize my neck movements. To confirm vertigo you can go to your Primary and ask for a Dix-Hallpike Test, if you are positive the doctor will know it in moments. It can be corrected with Vestibular PT which I very much recommend, it was a big improvement for me. I hope you feel better soon.

22 hours ago, vepa said:

I was actually having a discussion with someone about this, and we talked about doing sort of a "Humans of New York" sort of thing but instead it's Humans of Dysautonomia and it features people's photos and stories about how dysautonomia has affected their lives. I even created the social media pages and reached out to a local dysautonomia community, but that's about as far as it's developed so far.  I'm hoping to actually get it off the ground and running this month, but would like input and help from other people in the community if you're interested? 

I think it's a wonderful idea. Some may initially feel privacy concerns for sharing such intimate information about our lives but I think once the ball gets rolling it will become an excellent and inspiring collection of first-person narratives.

I think the daily challenges would fill a calendar, maybe start with waking up and don't want to get out of bed because it's standing vertical after being horizontal while you slept. Every hour of the day is a post of the will and endurance we have to make it to the end of the day intact. Fill the pages with photos or drawings, make some tee shirts about your endurance and sell them on ETSY. Be creative and overall show that you are getting on with your life in spite of everything an invisible illness throws at you. I am on FB, I am Trudi Greissle Davidoff, if you send me a friend request I can see your posts.

I have no complications, and I should not from a dead virus. I am 60, my primary takes no chances. I get told, not asked, I'm getting a flu shot and whammo it's in and over. I adore my primary and completely trust him. I have my yearly physical next month and I expect a pneumonia shot or anything else he can zap me with. I would be worried if he didn't vaccinate me regularly for everything.

On 9/28/2017 at 1:57 PM, mountain girl said:

I also experience dizziness, nausea, become more fatigued when looking at a computer screen for too long. I actually got rid of my smart phone for a flip phone. I like coming to the dinet website for information, but can only do so in short visits.

I also find it can trigger migraines.

Being online can be so tough, thank you for spending some of that precious time here at DINET.

On 9/27/2017 at 8:11 AM, Lily said:

The issue might be the refresh rate of the screen.  Does anyone notice different effects with TVs vs movie theaters vs computers?

I  cannot do movies without diazepam. The speaker vibrations seem to set off my vertigo, the sound is worse than the visual at theatres. I need to wear my headphones or earplugs to go to a movie. I do get buttered salted popcorn and a giant cup of soda. 

It makes me worse, emails in particular make me have to go lay down. I can only work online about ten to fifteen minutes at a time. I also can't watch the tv or a movie straight through. 

I wish walking a half-hour a day would make my symptoms less or make them go away but that hasn't happened and I walk about 90 minutes a day. What will happen from a half hour walk is that your body has better circulation, your head gets some fresh air and a time for personal reflection, if you are effected by motility problems the walking will lessen them, and you get vitamin D from the sunshine. It does not make your symptoms go away or lessen or we would all walk 24/7. If your doctor ordered you to walk then walk. It's not so hard if you start by walking to the corner, and then around the block, and then a few blocks longer. Take baby steps to start any exercise plan and slowly build up your endurance. I wish you luck at your appointment.

2 hours ago, yogini said:

Does your electrophysiologist know you have vertigo? If you are diagnosed with vertigo and you feel dizzy, that dizziness might be from vertigo and not POTS.  That could explain why your numbers are fine when you are feeling dizzy.  

Separately, it is also possible to feel dizzy with dysautonomia while your HR and BP are normal.  

 

Yes, most certainly. He's the doctor who gave me my TTT, I did not pass out but with good dialogue Dr Bender still made the diagnosis. I was explaining to him then my Venn diagram of light-headedness and he said 'Vertigo, what do you mean by vertigo?' And then he asked the winning question. He asked the right question. "What makes it feel better?" I said I go lie down. And that was how it was done. After that I started learning about dysautonomias and wandered in the door here. My new shirt arrived. Photobombed by my balance board. I practice on it almost everyday. 

I hope the visit goes well for the girls. I'm keeping my fingers crossed for your family.

I saw the electrophysiologist this morning. My ecg was fine and so were my numbers even when I was so lightheaded and dizzy I thought I was going to either hurl or fall off the table--and he checked and checked and checked. My numbers are always fine at visits. lol. There are some wonky numbers showing in the recorder but nothing scary, nothing dangerous. He cut some of my meds in half to raise my BP. I go back in two weeks and he wants to see the balance test results from the test I will have this weekend. 

I have never heard of that but some is familiar. I am seeing the electrophysiologist tomorrow morning, my physical therapist in the afternoon and the balance test is on Saturday. Hopefully, I can soon stop wearing my monitor, i"m starting to look like an octopus hugged me from all the rings on my chest where I pulled off the pads to change them. I'm not allergic but that glue works really, really well. I know I've got some wacky numbers on the monitor, I want to see what he says.

Welcome to the group, nice folks here!

I am sorry you were misdiagnosed. They will be looking closely at my vertigo and balance history; the physical therapist has already forwarded his notes to the ENT. I have POTS and Vertigo, I don't have any ear conditions otherwise. I had two positive Dix Hallpike tests last year and completed Vestibular PT which helped a lot with my balance and overall strength. 

Baby Giraffe Syndrome. I do like that name, that's perfect. We have zebras and now we have giraffes. LOVE it! May the neurosurgeon give you some insight into your daughters conditions, I am hoping for their best possible outcome.

A couple of years ago, prior to any diagnosis, I went through a period of bizarre sensations in my legs that felt like parts of them were gone, not numb, gone. It was as if you had painted them with invisible man paint and they were not there. I was seeing and feeling them but my brain was telling me they were missing. Fortunately, I always had feeling in my knees and ankles; I taught myself to walk without limping. The worst sensation that I could not walk well ever was when my calves vanished--you say walk around like a baby giraffe--that is a perfect description of being so wobbly because it's not just being able to gain your balance, it's also having the strength to straighten your stance and correct your gait. In hindsight, if your Achilles tendons are compromised(?) you are going to have some problems with holding yourself erect and walking.

I turned on the keurig. I have apple cake.

Thank you HangingBaT.  We were having a big problem too with take-out more often than occasionally. It does help to lay everything out and double check. There is a whole world of few-ingredient recipes that do it well and delicious too.  I can toss raw chicken with any bottle of salad dressing, let it sit for a bit then drain and bake it until it's done. How easy is that!  Throw some spuds or yams into the nuker as a go with and add some fruit or something green to fill out the plate. I can give Hubs a sandwich 24/7 and he's content; sometimes I bake them, sometimes I make cold meat and cheese, sometimes a panini in the sandwich maker. And I love the electric pressure cooker. Sometimes I have problems with slow motility and don't digest well, I've lived on flan and egg custards I've made in the pressure cooker. And I make hard boiled eggs in it too--and they peel better than boiled.