WinterSown

I was just looking at these links the other day--all good advice.

https://disneyparks.disney.go.com/blog/disney-parks-disability-access-service-card-fact-sheet/

https://disneyworld.disney.go.com/faq/guests-with-disabilities/

https://www.undercovertourist.com/blog/disney-world-disability-access-attractions/

https://disneyparks.disney.go.com/blog/2018/04/moms-panel-monday-traveling-with-guests-with-cognitive-disabilities/

Have a fun trip!

I'm glad you checked the dose. It sounds like you might be experiencing some vertigo--it's very uncomfortable and the sensations are a little weird or freaky. Do you have some bonine or other motion-sickness medicine in your cabinet? Bonine should work well. I usually take one milligram of diazapam for vertigo, it is a mild muscle relaxant and tones it all down. 

9 minutes ago, CuriousThinker said:

Well, I just took my first Mestinon pill. It is 60mg. I took the whole thing. I wondered if I was supposed to break it into quarters or something, but I guess the whole pill is it.

I figure I should at least try this and see what happens. I don't have a major problem with fainting. It has happened once on a hot day. I do lose my hearing when I get up from certain postures laying down.

I think florinef is more for the POTS/fainting etc. I've also been prescribed that and I'll try one at a time so I can track what they do. I'm actually concerned about taking these because I don't think it is good to be taking these long term and I don't think they will return me to a high level of performance. So, that makes me think the risks and side effects would outweigh the benefits.

It should say on the bottle how to take the pill. You can also call your pharmacy or the doctor;s office and ask the dose. You should never guess about your dosage. I take 60mgs of Mestinon too, but take 3 halves. 1/2 tablet in the morning, 1/2 tablet midday, and 1/2 tablet in the evening. It's on the bottle of pills.

Also, it's really important to speak with your doctors ASAP and let them know you are not using your prescriptions properly even though they want you on these meds.  This has to be worked out sooner than later because doctors genuinely prefer patients that follow their advice and they like it even better when you call and say 'I need to make a change'.  Seriously, don't mess with your meds without advice from your doctor. You can delay your care or even make yourself worse. 

18 hours ago, ScottS said:

An excellent food (not supplement) source of magnesium are hemp seeds (aka "hemp hearts"). I put them in my post exercise protein smoothie and whatever soup I'm having that day. Three tablespoons (30 grams) of the seeds supplies 197 mg. magnesium - 4 mg of iron, 460 mg phosphorous and .3 mg thiamin too!

Per https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5579607/  :

"Therefore, cellular magnesium uptake is only being carried out by specific magnesium transporters and not by diffusion. However, since dead cells of the upper skin layer do not contain functional magnesium transporters, which have not yet been identified in detail, magnesium absorption may be possible only at the small area of sweat glands and hair follicles. A recently published study showed that magnesium ions can penetrate the stratum corneum in a concentration and time dependent manner which is significantly facilitated by hair follicles. However, hair follicles and sweat glands constitute only 0.1% to 1% of the skin surface. Even if a substance is absorbed in this area, the question of the clinical relevance of absorbed amounts needs to be addressed. In the study that examined the permeation of topically applied magnesium no information is given on the quantity of absorbed magnesium."

By the way, I take an epsom salt bath (3 cups per full tub) every night before bed.  

I know this white paper 😞 This about Magnesium Oil which isn't even an oil. Your skin is better at repelling than absorbing,  a spritzing is not going to do it enough to be noticed. Ingesting magnesium in food or supplement form is going to give you a better boost that a few spritzes of Magnesium Oil. Obviously, scrubbing with epsom salts barely dilutes the strength and at such high concentration what is absorbed is beneficial. Same for the bath, you are soaking for a prolonged period of time up to your neck--it's greater exposure with greater length of time. It helps too. And a nice warm soak is also good for the soul. 

Coffee addict here! I love coffee, no sugar and a bit more light than regular. Eight O'Clock is my go to in the supermarket. I use the brew cup in the keurig, there's one dribbling out right now. I'm having the Colombian from AmazonFresh--it's quite good; I've added it my subscription deliveries. Nummy, nummy brew.

How long have you had POTS ?

At least four years, diagnosed two years ago. I also have NCS and OI. 

Has the symptoms got better since you 1st got POTS as time went by ?

No. But my ability to manage them and reduce their effect on my life has gotten better.

How much are you able to do ? (Drive, stand, walk, shop, get out and about) ?

I drive to a few appointments or the market around the corner but other than that everything is delivered. We do travel by car for vacations nowadays and make frequent stops for walking.

What are your Pulze and BP readings ?

70/40 100 when it's a drop attack, 110/90 110 when I need to go lay down. When I am dizzy numbers are all over the place up or down.

I know I need a boost when I am constantly having to go lay down or curl up in the rocking chair. My energy feels like it has been sucked away and I just wish my batteries would run longer. My cardiologist told me to scrub my face with epsom salts. Just dampen your hands and pat the epsom salts with your fingers and palms (that's all you need) and then give your face a gentle scrubbing. I often do my neck and forearms too. I feel a bit more perky almost immediately and that energy boost has extended me often into the next day. And, how wonderful, my face is smooth and glowing--it's a great facial too! Beauty tips from my cardiologist. Win.

Doesn't that look yum! I love cooking for health and for the fun of it. I do it as a form of therapy--having to measure and lay out everything, then put it together and cook it. Fun and healthy and the family doesn't object. I love your beets--they look pretty with the greens in the same bowl. Yum! And I like your plates.

11 hours ago, dannyg said:

I was just wondering. How often do some of you get "Flare Ups" where you cant move and your shaking. I guess thats how I can describe them. Do they happen less frequent as time goes by ? And what do you do ? Do you just lay back and "ride them out"? 

Just wondering because since I had been diagnosed about 2 months ago, I had 5 bad "episodes", drove myself to the emergency room, and basically sat in a wheelchair shaking and feeling horrible for 4 or 5 hours until they took me in a room and really did nothing. I csme out of it myself. Last time they gave me an IV, put me in a room for 4 days and all I did was lay in thr bed. 

Wondering if I should "ride them out at home" or what to do. I think when they happen, I panic more, try and grab what I can, drive to the emergency room, and tbat might be making it worse raising my Pulse and BP even higher.

What would you do ?

They did nothing for you except bill you which is all they could do for you. Unless they knock you out you are going to have to ride out your symptoms. I have your 'bad' episodes dozens of times a day, I would celebrate having five in two months. Stop panicing over what you can handle on your own---you've already proved it to yourself--you're just working yourself up into a frenzy adding to your own stress. It is self feeding. Award yourself for getting through your bad attacks and use that skill set to get control back of your life, don't give in to self-crippling worry. 

1 hour ago, dannyg said:

Doing good. Laying here and upset. No answers as usual. Regular doc stops in tells me "you have a bad heart, somethings wrong, see the electrocardiologist". Heart doctor comes in, told him in not taking that pill to raise my blood pressure it put me in the hospital. He says when I stand my pressure drops, at night it drops so he wants to raise it. Now he zaid just use salt, no pills. Extra salt on food. 

So after 7 weeks, 3 trips to emergency room, 3 times in hospital, probably $30,000 in bills, Im back to square one with any answers. This group has been the biggest help to me more than any doctor so far... Im upset. 

 

I have a cardiologist and an EP, they work in tandem. The doctors are giving you good advice. I am in the process of doing that very same thing--having my blood pressure slowly raised upwards--been working on it over a year. The purpose is so that when I do have a sudden drop in pressure the starting numbers are higher. That means the BP drop isn't going to drive the numbers so low I collapse and smash my face on the ground. Within the last year I warded off collapsing at the curb and falling into the street, I got dizzy but I didn't go down.  If your blood pressure is dropping and makes you presyncopal or you are fainting then you may need to raise the higher numbers. Fainting is the gateway to broken bones and chipped teeth, you will recover from the faint in minutes, not so much the damage it does to you body if you land on something hard. There are many ways to even out what you are feeling so you can be comfortable and not collapse--adjusting drugs, what you eat and drink, and exercise are most of it, and with give and take it will be tweaked to you by your doctors. This is not a fast process but it works. Feel better soon.

19 hours ago, dannyg said:

Is it normal to have bathroom problems with POTS ? I drink a lot of water, maybe urinate only 2 times a day, still feel thirsty lot, and I go number 2 only every other day. Is that part of POTS  symptoms ?

 

I agree with @Pistol that you should pee more. I hope you mean two times a day more since starting to make an effort to drink more water.  Can you keep a diary of your poops and pees for a week? It will give you a good idea of your own pattern. I have a BIL who goes once every three days, like his brothers and father and uncles.Hhe married my sister who can poop every time she pees (me too, and our mom and aunts). You cannot change your genetics. If your bowel movements are dry or hard and you are straining then use some glycerin to initially help but adjust your diet by increasing with easily--digestible fiber. A bowl of cornflakes helps me as much as a bowl of raisin bran--whatever works for you. Feel better soon!

2 hours ago, Pistol said:

POTS can cause either - diarrhea or constipation. Try fiber, that helps immensely. However - having a bowel movement every other day is normal , some people do not go every day.It is NOT normal to only urinate twice a day while drinking a lot - is your urine dark or pale yellow? This can indicate whether or not you are dehydrated. Push fluids anyway - and mention these symptoms to your doctor. Be well!

I have been told if your pee is colored like apple juice or beer it is too dark, you need to drink more fluids. If it is lemonade or lighter you are okay. 

14 hours ago, gossamer4448 said:

I know its not my fault I have this disorder ,but I feel a lot of guilt.I feel like  I am a burden on my family. I know they love me but I just need a lot of help and emotional support. I feel bad because some people with pots are thriving,going to stores ,restaurants,jobs  and I am 23 and house bound still living with my parents .I also have a lot of  mental problems too (GAD,PTSD,depression)

Is someone laying a guilt trip down on you? Tell them to bug off! You had no control of the cause for dysautonomia if you even ever learn what that was. Management and medicine can help control or limit some of the symptoms but without the miracle of remission they are not going away. Anyone trying to make you feel responsible for this does not understand the syndrome and its many symptoms.

Yeah, some people are thriving. But I just signed up with PeaPod to get my groceries delivered--I can't go to the supermarket because the sensory overload is a trigger for me, and I faint if I stand too long.  Amazon takes care of the rest--no malls either, too loud, too busy, too bright. For occasions we choose quieter slower restaurants where the food is still good but the noise level is way less. I can't work outside the house anymore which triggered some depression, Lexapro is helping. 

Please be more kind to yourself. You are going through a tough time. Everyone here knows what you are feeling. Hugs.

58 minutes ago, Pistol said:

Thanks @WinterSown - GREAT tip!!!!

Anything that I think works! You can do stuffing like this too. Stovetop is wonderful but even for us it may be too salty, and Hubs doesn't need it. 😞  Mac and Cheese is like chicken soup. Everybody does it their own way and it's all good. 

I made a new one to me. I've made mac and cheese a zillion times but not in loaves. So, so easy. I wish I had known this when I was a newlywed!

I made mac and cheese in a loaf pan, chilled it, flipped it out,  cut even slices then wrapped them for the freezer. Defrost and heat in the microwave to eat as is or sear it in a hot pan on both sides.  I boiled a pound of pasta and made a two-cup white sauce throwing in every little bit of cheese I had in the fridge or freezer (my Mom's way). Added buttered panko to the top and baked them until bubbly.  Let it cool, then wrap and into the fridge overnight, then slice and serve or wrap as needed.  A pound of pasta will make enough for two 8x4" loaf pans. 

It was! And so good. I am going to try it with apples this week.

17 minutes ago, ScottS said:

I also (often) have sometimes intolerable leg pains at night. They're usually concentrated in and about my feet and ankles though, on occasion, they'll drift up higher. If I go straight to bed (without bathing) and still have on the compression sleeves and/or socks I've worn that day (*), the pain is usually worse. (In fact, last night it alternately felt like I was being stabbed and then set fire to). Sometimes it feels like the dysautonomia is punishing me for trying to circumvent its effectiveness. (I'm joking, but still...) I don't take any POTS specific meds, by the way. I did, once upon a time, but they only made me feel worse.

(*) Actually, have just taken them off as I never wear them to bed.

I don't wear my socks to bed, I overheat and that makes me worse. I do wear compression socks in the winter outside--I'm about to walk the dogs so I will wear them tonight as they are still kneehighs and it's below 30 outside, but in the house or in a heated building I just melt into a sweatbomb and then I faint.  Plain jane aspirins works as good as anything when my legs hurt but pleh. I've tried wearing compression socks at PT but I sweat like no tomorrow. If my legs get very painful there, often from some of the balance work I do, then I get on one of the bikes and ride like the wind without resistance--it drives the pain out.

Sounds like paresthesia. I hate this, it drives me nuts every day.  Sometimes I get  only the itchies but it's usually pins and needles with itchies. I do find taking a walk or a shower are distracting--there may be something to change in temperature which signals an end to the nerve over-stimulation, either way. the paresthesia settles down. 

On 1/5/2019 at 4:05 PM, green said:

Wintersown

I am glad to hear you're doing well on mestinon! It has been helping me too. Please keep us posted as to whether you find your benefits at your current dose taper off.

Did your doctor say anything about potentially raising the dose? I am curious about other people's experiences - I think my doctor said we could titrate up, but I lost my insurance because my work contract ended. I have a new work contract with the federal government, but we are furloughed for the shutdown. I can't get anymore medical attention until the shutdown ends.

So, I am taking 90 mg. of time-released mestinon 1X daily. I suspect I need to raise my dose. I could double my dose, but then I'd only have enough mestinon for about another 32 days.

So far so good. I don't usually take afternoon doses of my meds but this one I remember everyday. I got some extra chores done and slept well. As a side bonus, crossing fingers it is real, I seem to have better motiliy. That would be incredibly super awesome. I haven't taken it long enough to know if I need to adjust my dose up or down--usually my doctors tweak downwards. I did have bad leg pains last night, I don't know if it is related. I often have pain in my legs but this was a bit more. I like the extra energy but if it's causing the leg pains at night I need to stop.

22 hours ago, Jessica_ said:

I forgot to ask you about your vertigo. I have had vertigo briefly for the past 10 years or so. Except it was positional and would only occur when I would turn over from my left to my ride side and then objects would move or the room would spin. Now I am getting these episodes (I’m pretty sure it’s vertigo) where out of nowhere the world will start spinning and I feel like I’m going to pass out. It only lasts a few minutes and then goes away. I haven’t passed out from it and I checked my BP one of the times and it was high 140/99. Does that sound similar to your verigo? What are your spells like? What do you do for them?

More hugs lol 

Without a comparison your numbers don't sound bad at all--some of us do that as a norm or want that for a goal. Initially I had the side to side whooshies and a sense like I was in the center or a 33rpm. My primary tested me with a Dix Hallpike Maneuver and in about three seconds I started freaking out and begging him to sit me back up. My first sessions for vestibular PT were in a dark room with a wonderful young doctor cradling my head and counting down as he re-positioned the crystals in my left ear. It took a few sessions but it's much better. I still see the same doctor now for all of my PT scripts from the doctors treating my other dysautonomia symptoms and he has combined them all into one program. 

I don't get vertigo from side to side movement anymore, I rarely get the spin. Yesterday, I was in traffic stopped waiting for a light to turn. The truck next to me started to slowly back up because he was well into the crosswalk--I thought I was going to hurl right there. I was still and he was moving backwards.  I do have problems with length--the sidewalk extends or ripples up ahead. Doorknobs are weird sometimes too because of the reaching. And, I sometimes think I am seeing out of a fisheye camera lens; the view is slightly extended and a bit circular at the edges. I do have some balance and gait problems, I am still in PT and likely will be for some time more, but it's been a while since my shin had a lump the size of an egg from tripping into anything in my way.  

A couple of years ago we were vacationing and took a short cut from Cincinnati to Pittsburgh that took us through a corner of West Virginia. We drove on this little itty bitty mountain road that was more twisty than a roller coaster. We had to stop and I had to get out and pray to live. There was no place to turn except at a farm gate in front of beautiful cows. At about the same place returning, on the other side of the road, I got out and retched. As I was clutching the grass in front of me I grabbed a small piece of stone. I still  have it in the junk drawer in the kitchen, my souvenir. Lesson learned, study the geography for road trips and take the roads you can handle, or plan to take frequent breaks to do more than go pee, you need to walk and improve your circulation. We like little parks or tiny museums--fun things to find along routes. Fresh air helps chase the whoozies away. And water. Plain water. sipped. slowly.

My cardiologist, whom I've been seeing since my first bad tripping incident, always reminds me to try to find balance. He isn't talking physical balance only, but balancing how much I let symptoms effect my life. Sometimes you can't avoid triggers. For me, seeing things spin horizontally--like a carousel or a top, can trigger an attack. I'm okay with ferris wheels but put it on it's side and I'm whoozy doozie in a heartbeat. I do better in museums than amusement parks. Vertigo is effected by sensory overload--vibrations from heavy noisy trucks rolling down the street can bother me. Ugh. This is how the low-dose valium helps. It is a muscle relaxant and tones down the movement of your eyes and takes the edge off of the sensations at the same time. It works like a charm but has the caution of making you so relaxed you're off your sharp edge. I make a coffee or drink a diet cola--my fallbacks for energy because I can't do energy drinks which make me feel like a hyper chipmunk. I start with half a pill, I can take up to two pills. I need only one to knock me out. If I have to take the second half of a pill I am done and it's nap time. I can't always avoid triggers because life happens all around me but I do have some control with limitations. Vertigo is awful but it can be minimized and its effect on your life reduced. 

I started Mestinin 3 days ago (20mg 3xdaily). I went to PT today and I'm not passed out, I even had energy to wash and fold laundry.  I try to walk every night and during the day some exercises on the bed with my gel ring and big red ball. Steady exercise makes a big difference--just a little every day, no marathons needed especially for beginners who have to build up very slowly. I am satisfied with the benefits of some daily exercising, it is as good for your head as your body too, it's a big boost for both. And very important, be kind to yourself, be forgiving. Doing less running is still running and that's better than no running. Applause to you. 

1 hour ago, Stark said:

Hi All,

New to the forum, 30 years old. I've been suffering from POTS for about 3 months and was recently diagnosed via TTT. I have a few questions, if you don't mind.

1) Is it worth it to go to Mayo for additional testing? I have an cardiologist who is willing to prescribe different medications to see what works, but I've heard Mayo has a great treatment center
 

That's a tough call. They have a long waiting list. Work with your local doctors first. That your doctor wants to try various drugs or managements to help is just what you need, many are very obstinate about doing anything at all for a problem that's too often deemed 'all in our heads'. I have two cardiologists, one is an EP, and they work as a team to care for me--the differences are subtle but one works to reduce the symptoms and the other works to improve my quality of life--they both tweak my drugs. They are slowly honing in on the right combo of management and meds. The EP just added Mestinin a couple of days ago and so far, so good with that. I feel like I am experiencing less sensory overload and have more energy. win win

 

2) I've recently been suffering from severe neck pain and a host of neurological symptoms (headaches, tinnitus, dizziness, tingling in hands) is this normal for POTS? My neck muscles are extremely tight and I have limited range of motion in turning my head. Despite several MRIs, an EMG, an xray, and a consult with a neurosurgeon, they can find nothing wrong.

I had those tests and a neck doppler too. I'm glad they found nothing in your tests which means no physical defects (hooray! you get a win there still!)--I got surprised with radiculopathy and got a PT script which helped with range of motion and lessened some of the pain and parasthesia.  If your neuro is uncooperative, ask your primary for a PT script to help give you some relief. 

 

3) I have also had episodes of very severe shortness of breath, and the feeling that my body has "forgotten" to breathe. This occurs most frequently when I'm trying to sleep. Does anyone have any solutions for this? Is it dangerous? It was so bad last night that I went to the ER and I got no sleep afterwards due to it continuing all night. It was genuinely terrifying.

Sounds a  bit like air hunger. It can be scary as all get out. It is one of my symptoms following a Drop Attack, and I sometimes get this as I am falling asleep. Just like we would yawn but I'm gulping air feeling like I got winded or strangled when I did nothing to bring it on. I've found that getting up and doing some walking around or mild exercise is helpful in restoring my breathing and circulation. It's calming too. I do have less problems with air hunger than when my symptoms did first begin--I am not as worried about it as originally and that I think knocks down some of the anxiety which can fuel other symptoms. Feel better soon! You will, but it takes time to find the right combo of drugs, exercise and management. 

 

These symptoms are all very new and scary to me. I would appreciate any comments.

You're in a safe place here--everyone is very kind and helpful, very understanding.

I completely sympathize. I got separated from my husband while we were at the Cleveland Zoo and I had a panic attack -- I was so upset I didn't think to call him. He came back for me, he found me. This incident became part of my medical history and helped lead to my dysautonomia diagnosis. Last time we went on vacation we traveled in blue jeans with matching jackets and caps--we looked like twins which was the point. If we get separated we can easily describe what the other is wearing--the same exact outfit. We learned this from an elderly couple--the wife is not doing well and the matching outfits lower some of the stress in an accidental separation by the crowd or simply being unaware and wandering away from each other. 

There are some articles that might help, there are many people who feel the same as you with similar concerns.
Coping with Anxiety at Disneyland

Disneyland Services for guests with disabilities.

How to cope with a panic attack at Walt Disneyworld.

I do hope there's some information that can help with your trip--I also keep a vial of low-dose 2mg valium in my purse--I get vertigo from sensory overload. I bite the pill in half and take 1mg to start, and usually with a coffee or diet cola. I do fine, it takes the edge off of the environment. Mom's make a lot of sacrifices for their children--when you get to the gift store get yourself something extra meaningful because you earned it! 

Hugs.

31 minutes ago, ScottS said:

Food is also a trigger for me, and too volume my enemy. I also have to be very careful when eating raw veggies and (certain) fruits. I've spent many a night waiting out my gut as it flip flops about for (what seems to me) no good reason as I am not only very careful with what I eat but almost religious in how it's prepared. One thing that works for me (assists in speeding up my normally slow gut) is a cup of decaf coffee. Staying well hydrated (after a meal) can also make a world of difference. 

I drink coffee a lot. Are you choosing decaf because otherwise it makes you hyper? Sometimes I drink plain hot water with a lemon wedge.

Food is a trigger--volume is my biggest enemy. My digestion, in to out, is very wonky. I do better if I eat small meals. I am intolerant to high fat--soon finds me doubled-over and sobbing in the throne room. I have a few IBS and Chrohns books here with info and recipes--I fall back to a butternut soup recipe  on bad days (cannot believe how awesome and yum and no bloat this is). I bought the books used online with free shipping so no great expense to have them as a reference. I've been having a flare the past few months and have been seeing the procto again, I now have another script for PT or biofeedback (as he calls it) to help with motility--it's going to be core. I'm already doing this at PT but it's going to step it up.  The advice is to eat less, don't eat what will trigger you, and don't eat what you think may trigger you--trust your instincts. Eat better and you feel better. 

He also told me a couple of years ago to cook everything---no raw fruits or veggies. Then slowly add them back in. I do well with melons but half a Cutie give me a bellyache--sigh. Cooking was helpful--it cut down on a huge amount of bloat. Cooked veggies and fruits do digest faster.