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  1. Past hour
  2. bkweavers

    Vertigo

    You can try the chiropractor but honestly, it never helped my daughter's dizziness/vertigo. She had POTS and the dizziness was daily.( I don't say that to scare you because it may not be the case for your son. )Before her diagnosis of POTS, she was checked out by an ENT and the dizziness was not due to vestibular or inner ear. It was and is a symptom of POTS. Does he have other symptoms besides the dizziness? Brenda
  3. Today
  4. green

    Mestinon Trial Advice?

    I took the mestinon for the first time today. The doctor said he was prescribing the lowest dose, but clearly he got it wrong because they filled a script for 180 mg. It was scored, so I broke it in half and just took 90 mg. I didn't notice much, maybe I was better today, but it was hard to say. I am mostly excited about the possibility that it could help me exercise more intensely and with greater regularity, but I didn't feel up to exercising today either. I am planning on going for a run tomorrow. I am still very much in a funk. I have no motivation. It's concerning - I used to have a lot of drive. What is my problem? I am thinking about mixing the mestinon with rhodiola rosea, but concerned about interactions. Best, Green
  5. Yesterday
  6. Hippopotsamus

    Experiences quitting hormonal birth control?

    I just quit hormonal birth control and started the non-hormone IUD a couple months ago. I felt some hormone fluctuations the first 2 months, much heavier periods, my skin breaks out more, and I’m more emotional, but I feel like my POTS is a little better. My heart rate has been more normal and I feel less chest pressure which is hard to describe. Anxiety maybe a little worse? I always felt like birth control evened out my emotions tho.
  7. StayAtHomeMom

    Vertigo

    Ok. I will have to talk to him about it tomorrow.
  8. MeganMN

    Vertigo

    The chiropractor should be able to do the Epley maneuver. It can be helpful for vertigo.
  9. StayAtHomeMom

    Vertigo

    Can a chiropractor do the maneuver as well? We are due to see the Chiro in the morning. And honestly every doctor I have taken him to locally has been a joke. He is technically pediatric even thought he is 5'10 and 180lbs. And most of the doctors he has seen has just dismissed any of his issues. His PCP is great but he is super hard to get in and see. My son has always been pretty clutzy. At a young age it was due to his poor eyesight. Then he got glasses so things were better for a little while then he started growing. And his feet always grow before the rest of him so he is used to banging in to things when he walks. He thinks his walking this morning is more funny than anything. He is just happy the rest of his symptoms are gone. Honestly I think his symptoms last night were kind of freaking him out. Walking a little crooked today is a cinch after last night.
  10. WinterSown

    Vertigo

    Yep, that's it. That is a perfect description of the sensations of classic vertigo. He may also have experiences of other movement outside his body, it doesn't have to be the spins. Things may seem off or distorted. Take your son to his pediatrician or your primary and ask them to please do a Dix Hallpike Maneuver, which is a simple, non-invasive test that any doctor can do in their office. It only takes a a few short minutes and the doctor can tell quickly if there is a significant problem. Mine is managed with PT and low-dose valium; 2mg pills but I bite them in half. I don't know what you have in your medicine cabinet but Bonine is wonderful for getting rid of the foggy fuzzy sensations in your head. My PT sessions started out in a darkened room with the DPT rotating my head to reposition some crystals in my ear that were out of place; it took a few visits but that was a great help. Also, he has been helping me with balance and core strength so if I trip I can usually keep myself from falling. It's like a miracle. Vertigo is serious because of the loss of perception, the nausea and danger of having balance and gait problems. It can be corrected. I feel so sad for your son, vertigo is very unpleasant at any age and I hope he feels much better soon.
  11. bombsh3ll - I took a tablet before bed. I never tried the nasal spray. As long as you don't drink after you take it, and urinate regularly during the day (or excessively) you should not have hyponatremia issues, due to the "release" of excess fluids. I only had hyponatremia issues when I took it round the clock. I don't take it anymore, after beginning hormone replacement therapy I found that I was concentrating my urine normally and was able to stop taking it.
  12. StayAtHomeMom

    Vertigo

    I remember seeing some people post on here about their vertigo. My son came home last night and and was feeling off. He couldn't walk straight, clumsy to no end. The world was spinning and moving. Eyesight was blurry. Nauseous. Bright light from the TV was bothering him. Best way he felt was sitting kind of curled up against the back of the couch keeping is eyes downward. If he moved his eyes or head it got worse. I gave him some motion sickness mediation last night. Didn't seem to help much. He really didn't want to go to the ER so I have been waiting it out. This morning he is walking funny still but he says all of the other symptoms are gone. He says he feels like a Spinda though (it is a Pokémon). My question is when you have vertigo is it normal to come and go in about 12-24 hours? Does his experience sound similar to anyone else. I highly suspect my son has POTS, he sees my specialist on Thursday to confirm. So I try not to run him to the ER over every little thing. But this is a bit disconcerting watching my son go through this. I mean I have lived it but I feel so helpless watching my son go through it and can't help.
  13. Do you just take it at bedtime then? I find a tiny dose before bed very helpful in getting a full night's rest and feeling less dehydrated in the morning. It doesn't help me stand any but it does improve my quality of life. I would be worried about taking it during the day due to potential hyponatraemia, particularly as I don't produce renin or aldosterone & don't want to have to fluid restrict. Also do you take the nasal spray or tablets? Even one spray was far too much for me - I didn't pee for nearly a whole day and my BP went very high. I split a 0.2mg pill into 6 so take about 0.03mg which works but I believe my body is very sensitive to it due to having no production of my own (except when being infused with hypertonic saline for the test which isn't the case in daily life). B x
  14. WinterSown

    Legs burning as if I'm exercising

    Once in a blue moon my numbers look like POTS, I have VVS and OI with Drop Attacks, Vertigo and Dyssnergia. My EP calls it my NeuroCardioVasoVagulyThing. Pain is a big symptom, I have blood pooling and wicked bad paresthesia. A lot of OTC pain meds--aspirins work great but don't last too long. Naproxy sodium works better but without omeprazole it bothers my stomach. Fortunately my doctors are all on board Team Trudi, yay!, it is very well established that I am a dysautonomic trying to get better. They're all aware I do advocacy so we have great discussions because they know I've studied and I am sincere. This, to me, was one of the most important tools in getting respect and some extra minutes from my doctors. I keep them appraised of my studies and what's new in the world of management and care for dysautonomic patients. Show your doctors you are studying and making a herculean effort to get better and they talk to you about it. For care, that's a win.
  15. StayAtHomeMom

    caregiver kicking me out

    Best thing you can do is stay calm and request or find a different doctor. There are a few good ones in this state. They are just hard to find.
  16. Help4Me

    caregiver kicking me out

    Thank you for saying that SAHM.....one doctor kept yelling at me and saying I was lying and making things up....how can they get away with that....on the overhead heart monitor that shows your heart rate, o2 , and bp etc...my heart rate was 120 and I showed it to the EKG worker...and she said....that is not your heart rate that is an artifact ???? what ??? I said THAT is my heart rate..she kept arguing with me...I put on my wrist BP and PUlSE monitor and took it and showed it to her and said THAT is my HEART RATE....she told me she was a highly trained professional. What a nightmare....then she accused me of taking a photo of her when I was calling a POTS friend with my phone.....they said it was against the law to photograph a health care worker....I told her I did not take a photo of her .
  17. StayAtHomeMom

    Experiences quitting hormonal birth control?

    I did the Mirena when it first came out. I had it for the full 5 years. Didn't get pregnant so it worked. That being said I did have a light period ever single month the entire 5 years. I was that lucky 1 percent. After I had it removed I went through planned parenthood (no insurance) and did the depo shot for a year and then they paid for my tubal. Some people have said horrible things about the Mirena implant but I didn't have an issue with it.
  18. StayAtHomeMom

    caregiver kicking me out

    I live in Kentucky and when my sister in law lived here she had a hard time. They wouldn't listen to her either. Said she was a hypochondriac. Said it was depression. She moved to Louisiana. And she got diagnosed with MS.
  19. Help4Me

    caregiver kicking me out

    Roe.....I am in kentucky.....and I went to the ER.....was even sleeping in the waiting room....was seen and saw psych and social workers and none of them could help me.....they said I can't get into a nursing home...not sure why not....and they said you could try a shelter but they are full and only let you stay at night etc etc...basically no help at all......I feel like I am dying....and no one cares...maybe that is just how this disorder makes you feel.....but I am very weak, sick , scared etc etc etc.....went to ER 4 times in 2 days because I could not get my heart down....they say it is anxiety but refuse to give me any anxiety meds......i do not have anxiety at all....I only get upset because they called me a liar....I told the ER doctor my kidney area was hurting and he said quote " now you are just making things up" what the heck.//?? I am not making things up...I am not lying....he refused to do some blood tests that I thought would shed light on things...thyroid and cortisol...refused to do them....I am very frustrated..they kicked me out of the ER all 4 times and basically said don't come back.
  20. Help4Me

    caregiver kicking me out

    Hutch I didn't do anything wrong to apologize for .....my only crime was coming down with a dysautonomia...I have done nothing wrong....
  21. Help4Me

    i thought i had won

    I have the smothering feeling too....and I live in louisville ky too...so if you want to get together some time let me know....it is very very hard to deal with...I too had mono when I was 13.....I wonder if that caused this or something else.....do you still see that first doctor that diagnosed you and if not why not ???? I was thinking of getting an appointment with him but wonder if it is worth it if he can't help me....I am already DX with this.....I don't know what to do now......yes I have had the smothering feeling too....at times...it is weird and freaky....and very unpleasant.....Private message me if you want to
  22. Sorry I think it is called Cardiac Vasospasm....
  23. yes there is a syndrome called Cardiac Spasm....it usually happens at night though but you can google it....
  24. My labs initially looked like diabetes insipidus and I was prescribed dDAVP. It is a simple test at first with a blood draw after an overnight fast: DI or partial DI if your serum sodium is above 145, serum osmolality is above 295 and urine osmolality around 300. Later once DI was ruled out for me by a water deprivation test (not fun,) my family doc continued to prescribe dDAVP, but only overnight and it was for nocturnal urination and POTS. My son's pediatrician prescribes it to kids for bedwetting. The concern is hyponatremia - when your serum sodium level drops too low, which can happen quickly on dDAVP if you continue to drink any fluids. Several Vanderbilt articles mention using dDAVP for POTS and OI. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3419341/ https://www.researchgate.net/publication/290995380_Desmopressin_In_The_Treatment_of_Postural_Orthostatic_Tachycardia
  25. @Trying - until recently I had the same problem with nightly urgency and urinating too much and too often during the day. Since I started with weekly IV fluid therapy it all changed - I no longer pee too much, I sleep through the night without urinating, I am no longer retaining fluid ( 5 lb weight loss without diet changes ). I believe that it is caused by the electrolytes in the fluid ( lactated ringer solution ) are creating a healthier fluid and electrolyte balance in the body. The fluids also greatly improved energy, OI and exercise tolerance.
  26. RecipeForDisaster

    Low Pulse Pressure

    I find that this is a good benchmark for how bad I feel, even if my BP isn't incredibly low. The smaller the pulse pressure, usually, the worse I'm doing. I haven't found doctors to be that interested in this either.
  27. Pistol

    Legs burning as if I'm exercising

    @Derek1987 - do you have swelling or color/temperature change in the right calf, the one that burns?
  28. Roe

    Legs burning as if I'm exercising

    Did u take your bp and maybe u r lacking some salt as well. Have u tried anything like Gatorade or some sports drink? That might help but u really do need to tell your dr. I come here often to learn to and want the info. I am new to tall this and sometimes my body does crazy things an look to see what others got or get. See if I even have what they got and what they do. There is nothing wrong with info or asking.
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