WinterSown

I sweat on and off, sometimes with night sweats too. It's rivers or nothing, especially at the base of my skull where it seems to puddle rather than trickle down. It starts with a 'heat bloom' and then I get dewy to drippy. I haven't had a spinal tap but did just have several scans and tests of my neck and head and all they found was enough garbage in my cervical vertebra to get me into PT. For now they attribute the sweating to dysautonomia. I have less problems if I make an effort to eat lots of fruits and veggies that are rich in electrolytes.

I know where she got that six months idea, I know exactly where she got it. It's in a the wikipedia article in a sidebar. IMHO, it's completely wrong and needs to be edited. I recently discussed the 'six months' erroneous wiki content and that it is misleading and needs to be updated to more current and honest content. It doesn't take six months to clear up or we'd all be cured. Good grief. I can suggest you read and print out DINET's Dysautonomia survey results, use a hi-lighter to mark what pertains to you and share it with your doctor. It will give her an eye-opening as to the realities of what living with Dysautonomia is really like.

Bring some cooling neck wraps and take a small cooler with you and keep in it ice andbseveral wet washcloths. As you get hot just take one out and wipe your face, neck, arms, ankles, etc. Being able to cool down quickly will be a big help on a big day.

Your doctors will discuss with you ways for you to keep active in your life. Dysautonomia is life changing but it doesn't have to be soul crushing too. I have a wonderful team of doctors that work collectively to improve my life--a cardiologist, an electrophysiologist, a neurologist, and a DPT--a physical therapy doctor, and there's a primary too but he defers to the cardiologist. The cardiologist seems more to work on my entire person and get my body as strong and healthy as is possible to withstand my worse symptoms, he is all about nutrition and healthy living. I have swinging symptoms and he wants me to achieve balance, physically and in my inner self; the heart, mind, body and soul are all connected. The EP has been knocking down my drugs with the hope of me taking as few as possible some day. It's been micro-management as he slowly and carefully reduces the doses as I handle the changes. The neuro helps get me out of the fog with cognitive and creative therapy--I love her, she let me create my own self-adaptive neurotherapy program which has been excellent for fog blasting. I read non-fiction, I make things with my hands, I draw and take photographs and have a new hobby of collecting used cookbooks and making new recipes out of them; I love all of that and that's the key--learn more about what you love and don't give up doing what you love doing, just learn to do it differently which stimulates your brain. I still have some really bad days but the in-between times are longer and I get out of deep fog faster. I go to PT twice a week for balance, gait and strength training--I don't lift weights but I am now strong enough to support my own weight if I think I am going to feint and collapse--I can endure so much more, so much better. I've been in PT for over a year< i'll keep going as long as I keep getting renewals because the exercise makes me feel better. The neuro said I don't look like a ghost anymore, I have better perfusion now. DINET's last newsletter has the article I wrote about my therapy, it's called Walking Out of the Fog.

I lost my sleep cycle over three years ago. I sleep when I am exhausted and work when i am not. Physical activity and improved nutrition can help with better sleep but may not get you back to where you were. After you get into a maintenance routine you should have better sleep.

It could be a dysautonomia symptom, it could be neuro or muscular, it could be you're just really tired and/or are fried from sensory overload. When my eyeballs are bothering me I have to go lay down with a cool or warm wrung-out washcloth cloth over my eyes--I see what feels best, if cool doesn't do it I then try warm. My eyes can get wonky to the point where it's impossible to read or walk without me wanting to hurl or scream. Do you have any muscle relaxants at the house? I take 2mg diazapam for vertigo; my EP always reminds me that valium is a muscle relaxant and I can also use it for when I get the shakes or trembling. It does help with my eyes, I start with 1mg and work up from there if that small dose doesn't have an effect. Certainly talk to your doctor about the eye movement if it doesn't clear up over the weekend. For now, lower the lights, use compresses if they help, put your feet up and take a solid nap when you can. I hope you feel better soon.

Why can't you talk to your doctor? They don't call you back when you've phoned in that you are having adverse drug reactions? If that's the case you need to immediately start keeping a phone log and record your calls.. Call their office again today, and again after the weekend. If you do not receive a callback by end of the week you may want to consider getting another doctor because you need the right drugs to heal. You also should be treated with the same professional courtesy and respect that anyone expects when they pay for professional services. Do not forget that you have a fiduciary relationship with the doctor and if you are not satisfied or the work is sub-par you can report them to the state, your insurance company, the better business bureau, Yelp, review sites, and whatever hospital they are attached to. You can get your money back for your copays and tell the insurance company that the doctor's office is not returning your calls about your drug reactions. It's your life and the doctor is not aware that he/his staff is treating you with low professionalism.

As long as they are your own pictures then why not. I would love to see some of your garden pictures. I'm getting my garden back in shape after three years of not working in it except to mow. Ugggh. Lotta weeds and baby trees. I will convert some of it into butterfly habitat.

An eight+ week schedule is not that bad for visits, really. Most of my doctors are three or six months between visits but should I call that I need to come in they fit me in the next day or next week, never longer. My cardiologist took me off of all supplements including sports/hydration beverages,and told me I was to get all my nutrients, from everything I eat and drink. I was a little bewildered where to begin so I joined Weight Watchers for their nutritional tools. I started feeling a lot better withing 72 hours. I was stunned by the speed of the turnaround--eating a balanced diet again has been a big plus. I must also exercise and walk daily or my circulation worsens. The EP has slowly been cutting my drugs down and I am now off a couple and the others cut down to half or less. And, the neuro, has me doing creative arts,, reading non-fiction, and studying to get me out of the fog. Overall I am way better than I was diagnosed fifteen months ago. There are many things you can do to lift yourself up and feel better though it can be a matter of time before you discover what works best for you. Keep trying.

They get a bad headache. And can faint. https://www.drugs.com/answers/can-it-cause-harm-if-you-take-nitro-glycerine-404361.html

Heat Intolerance can exacerbate many symptoms and bring those rarely experienced to the forefront. Without more information it sounds like the event was a trigger and not the cause. It can be educational and helpful to spend this summer increasing your intake of foods, that contain electrolytes--not just waters--it can be a big assist in hydration and overall health. https://heartmdinstitute.com/heart-health/heart-attack-and-stroke/recognize-and-beat-heat-exhaustion-heat-stroke/

welcome to everyone!

#hippiegrandma Pull up a chair, grab a mug of coffee and have a cookie--I am sorry to hear about your diagnosis but you're in a good place here--people can help you with their experiences so you can get through your own. It's a very good support group.

Yummm, banana bread. All my cookies are gone, eaten to the very last crumb. MIL called, she loved them. I agree with you, it's like learning to cook again. A lot of these old recipes seem like ones I learned in Home Economics back in the early 1970s. How would you define it? Maybe call it Retro Cooking. Hubs requested vanilla dunkers for the next batch, I guess this one's a make again.

My adventures in new recipes from old cookbooks continues and I made Basic Drop Cookies last night--easy tweakable recipe, super easy. I used a recipe from King Arthur's 200th Anniversary cookbook, the online version has about twice the chips and nuts than the cookbook recipe. I could take these to a cookie swap or bake sale and hold my head up high. These are more cakey than chewy--like a cross between a cookie and a muffin top--they are superb dunkers. YUM. I made them with the mixer and after chilling measured them out with the ice cream scoop, got 18. Yesterday was my MILs 91st birthday, she got six of them in a box. I'm too generous.

I hear you! Every little thing that is an energy saver adds up. Slight changes can make big differences. Over the past few months I've been making some changes in how I do things. I prep and cook a LOT more for my freezer, last night we had wings that I put in marinade and froze in a baggie; I just defrosted them in the nuker and baked them on a foil lined pan--baked the wings and tossed the foil afterwards (I don't have a dishwasher.) I make mini meatloaves in muffin pans and pop them out for singles--Hubs calls them Meat Muffins (lol), they freeze beautifully and defrost and heat so fast for a sandwich. I putter around in the garden restoring it because I did nothing except mow for three years. Some of the old tomato beds are going to be converted to habitat--more shrubs and reseeding wildflowers. Inside the house I've been de-cluttering by donating or chucking things I will never need again. Now I don't have to dust them again or store them or care for them in any way anymore. I went outside for a look, my wildflower seeds are sprouting.

My thigh bones throb. Nothing helps except time. And a lot of soaking with epsom salts. I lay down on the bed and it feels like gravity is pressing me into the mattress. I know that getting up and walking around will help my circulation but I am stuck on that bed until I sleep it off. I hack a lot too now--I think I'm just throwing off toxins. Hack hack hack. I think spring allergies are whacking me too. Plain jane aspirins seem to help better than anything else for the pain.

We knew we had a vacation week coming up in the fall and we hadn't nailed down a city yet. I saw this event coming up and asked if he wanted to go and he said yes instantly. Hubs loves anything historical and military and I love staying in river cities. I booked the trip twenty minutes later including overnight stopovers in Corning for the museums. #doitright I have blood pooling in my hips if I sit too long so I need to get up and do more than take a pee break on road trips. I have to get out and walk around for a while to get my circulation and brain oxygen back to comfort levels. We use a nifty map site that has pushpins to some of the more unusual stops along the roads. We visit a lot of these. The benefit of museums and parks that are off the beaten path is that they are just as fascinating but are quieter, smaller, and usually there is no wait for the bathroom. Roadside America.

#whoami There are regional events in October. Hubs and I attended one in Niagara last fall, we met with others for a lovely dinner and watched the falls turn turquoise for Dysautonomia Awareness. I think they will be illuminated again this year, I have not heard otherwise. There are other events in Canada or right across the border in the states. We drove up from Long Island but other families had traveled as far from other states--I know some drove from other states and provinces. Worth the trip because Niagara does not disappoint.

@RecipeForDisaster Any day you are not on the floor is a very good day. Doctors see us in fifteen minute segments which you hope they remember as well as you do. Were you better than the visit before? If so, the doctor was very sincere in saying 'glad you're doing better'. Be happy s/he remembered or maybe they didn't and only have their chart notes to go on . You appeared better than your previous visit. #celebrate #smallwins

I hope you feel better soon--heart, mind, body and soul.

It depends on the individual--that's what it's all about. You remaining you. And not letting dysautonomia or the negative social side-effect, like your life careening out of control, change who you are as a person. It's been almost fifteen months since my diagnosis but two weeks ago my MIL was questioning which doctors gave me that diagnosis!!! Obviously, that was about her and not me. Oftentimes, no--a lot more than often; it's pretty much every single time someone bugs you, questions you, snoots at you--they are trying to make you think you are less than you say you are. It is all about them. Take a moment and consider the emotional weakness of person who has to bolster themselves by attacking someone they know has a confirmed diagnosis; they know you are ill but you are an easy mark to them until you stop them. I would not let my MIL get the upperhand. I had my facts and I was able to tell her she was questioning two cardiologists (she sees one of their partners) and several other of her/my doctors including our primary who I started seeing on her recommendation. In other words, I whipped out everyone's credentials and beat her over her head with them--well, verbally of course, and I was polite because she's 90 (I am 60 and she's been POed at me for nearly 40 of them. hehehe). She didn't get her jollies--she looked so sad too 😞 You have paid a ton of money for your medical documentation, whip it out in conversation when you need it. As situation warrants, you can be more or less polite when you tell someone that your personal life is your own--they usually get the hint, if not then ignore them.

'Glad you're doing better.' means just that. It doesn't mean 'Hallelujah! You're cured!!!' I saw two different cardiologists yesterday and heard the same from both of them and I GLOWED when they said it because it means they noticed I'm trying to get better. Doctors like when they physically see you are following their advice or by some miracle (other than them) you are improved. It doesn't mean you're out the door and gone from them forever. It doesn't mean that you won't feel like crap ever again and it doesn't mean you are cured. Usually it means they see you're strong enough and can begin another stage of care to get your life back on track again.

There are some online POTS forums where it seems their tone is more about who has the most symptoms, the biggest pillbox and the worst non-understanding friends. These places are about keeping you down in the dregs with the worst of them. Avoid these forums because they're not about getting better. This forum here, DINET's forum, is quite the opposite, we're all about encouraging people to get better; meds, exercise, the right foods and personal disciplines can bring about an amazing change. If you are worried friends will treat you negatively because you are making a winning effort to get better then you need new friends. Dump anyone who disses you for not staying down and in despair, physically and mentally. You must rise above their words.

Vertigo is one of my primary symptoms, it comes and goes at different times and strength. I pop one mg of diazepam as needed, currently several times a day but it helps. I have had Vestibular treatment to 'rearrange the rocks in my head' as my DPT loves to say, and I have been in physical therapy for almost two years steady to help me with balance and gait. I am much better, I don't fall over and trip as often and I am, overall, much stronger. Chronic vertigo is a life changer but it doesn't have to change everything--you just learn to do things a bit differently. Sensory overload is a huge trigger for me so I've learned to shop at stores when they have their slowest hours--info I can get by googling the store's name and address. I also wear wireless headphones with pads--not earbuds--which do a lot to cut down on external noise, sunglasses I often wear in large stores--their high ceilings are very glaring and bright. We will be travelling for vacation in a few weeks. I can't fly but we instead take wonderful driving trips which I map out ahead with lots of stops to take a break, walk and get my circulation going well again. Vertigo made good things different, it didn't make them go away. It was not easy at first but I am getting better at having a more active and full life. You will get it under control and get back a lot of what you used to do, it will happen.