WinterSown

I get Air Hunger as a part of my attacks, it can be quite intense at times and others it's just like forever yawning. Air Hunger is also known as Dyspnea. It's something I've not entirely gotten used to but it doesn't frighten me anymore. I am sorry you are experiencing this and I encourage you to contact your doctor's office and ask for a call back, describe your symptoms and they will let you know to come in or advise on a specialist that can help you with management. Please feel better soon.

I have Vertigo and I am in the middle of getting a diagnosis for possible Drop Attacks which are a subset of Meniere's. I take 1-2mg valium to control the symptoms, I can double the dose to 4mg but it's naptime after that amount. I have had an upswing in my neuro symptoms and I seem to be extra sensitive to stimuli; rapid movement of my head or eyes will set off my symptoms. I've found that the valium is the only thing right now that makes it possible for me to concentrate and work. If you have sensory overload Valium may make it possible to function.

I had my VEMP test today, it was physically the worst test of my life. LIJ Hearing and Speech was an awesome place, such nice people took care of me. They even have a help-yourself keurig bar. For the test I had leads coming off of my forehead and neck right at Frankenstein's bolt placement, and then they put the plug in my ears, left, then right and back for more on the left. It was like a cross between a jackhammer and a cuckoo had been shoved into my ear canals and set to vibrate. Ugh. I wanted to scream and I thought I would hurl, it's not supposed to make you nauseous, it just may have been sensory overload. They told me over and over what a good patient I was --I think because I didn't go nutso freako on the table in front of them (can't imagine why!) I didn't get a sticker saying I was a good girl but they validated my parking so that's something. I treated myself to a haagen daz cone afterwards but it didn't do it, I really want a big bag of money and a new life. This beautiful wood carving was on the wall at the center, I had to take a picture--it's spectacular art.

That might be something to be researched in the future.

Oxygen is a therapeutic drug. I wonder if it is related to the oxygen? Are we getting an oxygen boost to our brains?

I want to be you when I grow up.

That's annoying to get the constant urge. Please consider to call your primary or gyno and ask if you need to come in and rule out a UTI--a urinary tract infection; the few that I have had made me pee rivers. You may also call the doctor that cares for your dysautonomia and let them know about this change--suddenly you are peeing more than before and it is disrupting your sleep. In the meantime, you can start a daily sheet of what you are drinking, how much and when. You may unknowingly be drinking fluids that are/or contain diuretics. Or, volume is toooooooo much. I think keeping a diary will minimally be good documentation for when you see your doctor, it will help them to get you into a maintenance where you have enough fluid but don't give up your rest or sleep. Bring it with you to your doctor visit. There is a balance and I hope you find it soon.

My cardiologist told me to use epsom salts as a face scrub. OMG, this works so well. I get a magnesium energy boost that lasts, I think for hours and an exfoliating facial as well. My cardiologist totally rocks it.

Welcome to the forum, it is nice to have you here. I was diagnosed with POTS in March but I had to quit working about a year before that, I actually fired myself. And I work out of my own house--I can't get to work on time when I do work and I don't show up for days without telling the boss, lol--I'm the boss. I own a small non-profit, I still can teach online but a lot of the day to day functions I had to end. Fortunately, my health insurance is through my husband's job or I would have had to continue. I was tested at Cushings/Chiari Institute and found to have short term memory loss, not from being deoxygenated (hooray!) and I get confused rapidly. The information gets in but I am looking in the wrong file draws to retrieve it. I do neurotherapy daily to help me with that, the fog and blackouts. My balance is also fried and I have vertigo. I can't do the things I used to do so I learned to do other things or do them differently. I still have to do some work but I must do it in the evening. Daytime has too many triggers of light, sound and motion. I don't know the work you do but if your company can accommodate you and your family is understanding, I would suggest switching to second shift or the red eye--the middle of the night is for me a great time of creativity. Maybe you can do a split shift of some work in the afternoons at your place of work and do the rest at home in the evenings. You said they can be understanding--this might be a compromise that makes everyone happy. I wish you well, I understand your angst--so very many of us do. This is a hard time and the decision to continue working, taper off or even entirely quit is a very difficult and emotional decision to make. Support organizations like this are very important. I was so lost in the fog but I found my way here, I feel welcome, at home and safe here. The forum members have been through so much themselves--when you have a hurdle, they can help you get past it.

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.

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?

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.

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.

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

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.