WinterSown

Welcome to everyone. Happy New Years.

You are certainly stressing your heart, only a doctor and testing can tell if it being damaged. Chest pain needs to be investigated by a doctor, call your primary and get a referral to a cardiologist to begin getting your symptoms checked out and get you into a management that will get you better. I do exercise everyday but my program was developed by my PTD to match my needs. He has slowly increased my endurance and strength to match my capacities.

19 hours ago, joojee said:

In my opinion, a true, classic panic attack is a severe autonomic nervous system reaction, probably some sort of cardiovascular event, that is triggered often, but not always, by an acute feeling of anxiety.  The panic attack (and this is such an awful, confusing name for it) is the physical event....

Have you ever experienced one yourself? What did it feel like? 

It's not a guy/gal thing at all. Nope.

How are you defining exercise intolerance?

Some people can have more or less reactions to activity, especially if you are not used to it. I've been working with a PT for almost two years, just got back from a session, and I am hardly wiped out anymore from them. It's part of the therapy I do there--to have more endurance. I think it's great that you can do physical activity, I exercise and walk everyday--there are a lot of us who do. There are some forums where discussing exercise is practically tabu but there are other places where it is encouraged and discussed--we don't all hide in the dark, there are some dysautonomics that do encourage others to exercise and we have our forums. After a while you learn not to talk about it on the other forums because it stresses out people who don't have the physical capacity yet to do much activity.

A couple of weeks back my cardiologist knocked me off all supplements, everything now has to come from whatever I eat and drink. I keep a jug of water on the kitchen sink. Today I crushed some watermelon and added to it the juice of an orange and strained the mix into the water jug. Wow. This is my first try with any aqua fresca but I love it. This isn't sweet at all but so good. Watermelon is loaded with electrolytes and the orange has some too, it does give the water some boost. I'm going to try cucumber and celery next. Does anyone have any combos that they really love? (It's a great way to use up my fresh produce before it dies in the fridge.)

Happy to have you join us, this is a very friendly group.

Some days I just shampoo and use the soap on my hands to wash up and down my body as fast as I can, and get out in a minute or three. It bugs me most when I get home from PT and I am sweaty but don't have the energy even to get undressed, let alone drag myself into the shower. Baby powder only goes so far. When it's bad I sit in the tub and use a plastic cup to dowse myself. I cut my hair to a micro pixie because I can just towel dry without a comb out. I hope you feel better soon.

Ask how soon cutting back on your meds will make you an eight or nine. Get a realistic timeline and if you aren't happy with less drugs get on the phone and tell them. I think its great that you are getting better. Every few weeks my EP cuts one of my drugs in half to make me better and it's been working. My symptoms are pendulous and the doses I needed a year ago are sending me to fogville now, if I had kept with the stronger doses I'd be on the floor. It's not easy to give up something you've become dependent on but getting better as a result of it is the goal. it's a tough to be told to give up a script, but then again it's a sign of getting better.  I wish you well.

Tonight I am happy. They're not making me nauseous anymore, I take them with food now and I am fine. Fortunately it was just a matter of a few days, I was able to adapt my management to use them. No reaction at all now except feeling better. I didn't need any naps today and could exercise with a few different pieces here, I'm about to go put on my ski pants and walk the dogs one after each other, no snow but it's COLD. Tomorrow I go back to PT, my first visit after starting thermotabs--I am stoked to see how well I do in my workout. 

Yes, that's right. Salt pills are not drugs. Sorta. And, as I wrote above, I would still like to be off most my drugs next year. Luckily my doctors are professors and or department heads. I suspect they may know about sodium and its effects.

The neuro put me on the thermotabs because my BP is as low as my energy, got lots of fog though. I'll be seeing my primary next week and the two cardios in three weeks, we'll talk about it and adjust as needed. I would love to be off most my drugs, I am on less than last year which I attribute to my PT who has created wonderful exercise and balance programs for me. 

I love broth, I love mugs of it in winter. I am making veggie soup this afternoon--yummy brothy goodness. This morning I had less of a reaction. I made sure I was well fed and watered first and then I went back to bed for a bit after taking the termotab. I felt better afterwards, less barfiness. I am learning how to take them--I don't like them one bit but so far I have some less fog and I'm less fainty so I need to stick with it until my reactions or symptoms worsen.

Snug yoga pants will do it too. 

Thank you Vepa. Right now it's all hands on deck to raise my BP and this is another step in the Cut My Drugs and Raise My Vitals ChaCha. My doctors are very good at keeping me out of the gutter, literally, so no complaints there. I so want less reactions to my actions to improve my health. Right now I'm just taking three tabs--AM, afternoon, and PM, I'll give it a few more days and hopefully it will settle out or I'm chucking the bottle. 

The neuro added thermotabs to my management a few days ago and so far they seem to take the edge off some symptoms yet about a minute after I take one I am instantly nauseous. I have to drink more water to thin out the salt bomb which helps ease off the reaction intensity. I am hoping this is just my body adjusting to a new drug and I'll get used to it soon but in the meantime does anyone have advice on how to take these without the quease? Pleh.

Thermotabs

So nice to welcome new folks. Glad to have you here.

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? 

28 minutes ago, edriscoll said:

I will tell you that it was the best thing that I could do.  Since leaving, I have been able to focus on my health and find new ways of doing things that have helped me find my way back to feeling like a productive, valuable person.  While working, I felt like a failure everyday towards the end.  I am so, so much better at avoiding episodes by resting, slowing down when I need to, moving or not moving depending on how I feel, etc.  I was able to adapt to my new life at my own pace.  I never would have been able to do that while working.

 

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.

32 minutes ago, Big Guy said:

New to Dysautonomia diagnosis (about a year ago). Dr's haven't done much more than feed me some extra pills. Most all my education has come from my own research. My question is: did any of you have to quit working because of Dysautonomia? If so, how long after your diagnosis did you have to stop? That is really my worst fear. My coworkers are aware of my issues and they try to make concessions for me. Good on one hand but that can hurt when they get tired of the doing extra for me. Any comments are welcome. Thansk.

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.