Roxy

The IVs manage my peaks and valleys I don't get so many highs and lows, it stabilizes me a little bit. Works better for me, meds really mess me up.

I have had multiple issues with hair color, make up, nails polish...over many years and my doctors finally said no more. For some reason it just sets my POTS and NCS off horribly. They are not sure if it is also part of my allergies.

 I had a chest port (power port) put in about a year ago, best thing ever! I have been getting 1 1/2 bags of saline two times a week during the cooler months and 2 bags twice a week in the hotter months for about 2 years now. Prior to that I received IV fluids on and off for 2 years as needed. ( I am a hard stick and terrible veins) It has helped a lot, I don't end up in the ER as much as I used to. I still feel crappy but am able to do little things now, not just lay in bed all the time. They are still trying to figure out all my issues/diagnosis. It has been good for me. 

I use oxygen (rate of flow is at 10-15 for 20 minutes off and on) and that helps if I catch it early about 50 percent of the time, if not they use Dilaudid, Ketamine, Benadryl, and Toradol ( or any combination of some or all of those meds). I am on my second round of Botox and am still not sure if it is helping. So sorry about your father.

I was asking about the cooling equipment because I used the ones with ice packs and the dunk in water ones, they never kept me cool enough. If you are like me insurance does not cover these items, in saying that have you looked at coolshirt system? They have vests, t-shirts, and pants that run cold water through micro tubes. They are pricey but I have found them to be great, I live in Nevada and the summer temps get over 100. I am very heat intolerant this has been a life saver for me, I don't get money or anything from them by recommending them to people just so everyone knows ahead of time. It's just another possible item to try.

What type of cooling vest and stuff are you using? How much cooler is it keeping your body? Any compression gear on? Sorry this is happening to you, hope someone comes up with some answers for you.

They are not sure yet because I have an adrenal gland mass and a pituitary lesion so both of those kind of mess up the blood work and other testing. Once they get those taken care of we will be able to hopefully figure out what one/kind I have.

I am on ivabradine 7.5 mg twice a day,  atenolol but not for high blood pressure, and roughly 16 other meds for all the other issues. I see a cardiologist, neurologist, pulmonary rheumatologist, dermatologist, GI,endocrinologist, infusion clinic, primary care, allergist... cardiology is the main care provider because he has a background in dysautonomia and has the final say in my meds. I have to go off the atenolol once a year for a few weeks or it stops working, my body gets where it doesn't work without the break from it. We haven't found any others I can tolerate or am not allergic to.

No high blood pressure and multiple echos and other tests, same results. One possibility is the tachycardia, that is main thing being checked currently. Was trying to see if others have it, or if my genetics are playing a part in this one. Thanks for the replies.

So I recently found out I have left ventricular hypertrophy and diastolic dysfunction. So far the doctors are in the we need to find out what is causing this stage. Anyone else have this with POTS and NCS? What about early onset cataracts? 

I am on ivabradine 7.5 mg twice a day and it has helped tremendously, so far no bad stuff.

Be careful with the coconut water and how much you drink because I ended up with potassium issues, the doctor said it is a fine line with some of us potsies. One could be fine and a second enough to put you over or 4 is fine and number 5 does it.

I have had more surgeries than I can count ( I am allergic to locals- canines the amides and esters) and I always had issues until my new doctors listened to me and were willing to have an open mind. They always give me IV fluids before, during, and after, keep a very watchful eye on my temperature, O2, and bp ( sometimes multiple monitors for those items) Then if needed steroids, electrolytes, heat packs, cold packs...I still feel like crap afterwards but it lasts for a lot shorter time. 

I have epi-pens and have had to use them frequently, lots of allergies ( medicines, insects, perfumes, and materials (synthetic stuff).... sometimes the epi-pens give me issues with my pots and ncs, but like the doctor told me I'm alive to fight another day. 

This is what worked for my family. We explained to our children about my medical issues at a level they could understand when they were younger. They are now grown and when we talked to them a few years ago they said they were more worried not knowing what was going on. They said that they were imagining worse things not knowing. I write down any questions I might have before my appointments and i actually record my appointments if I don't have someone else with me, that way I can go over it later (brain fog issues). Depending on your doctors sometimes you have to press them for answers, you have to be your own advocate, that can be hard, it was for me.  All I can say is take it one day at a time, and the people here on the forum are knowledgeable, caring, supportive, and great listeners. 

I have a lot of the same issues and my doctors are still trying to figure out what is going on. Will let you know if I find out anything new.

Welcome everyone, hope to see you all on the forums.

I am starting Effexor for the migraine I have, I have tried everything else. If the Effexor does not work the only thing left is Botox. The neurologist doesn't know where else to go because of all my allergies or reactions to the medicines. 

I think I will give that a try Katybug, thanks

Welcome BeachLover, like MomtoGiuliana I have leg and foot cramping in evening and early morning. Mine is due to slight electrolyte imbalance. My right calf muscle is always the first to cramp up. 

Welcome everyone, glad to see you found this wonderful group.

Hello, and welcome! Glad you have found this wonderful group and forum. 

Official diagnosis of NCS in 2005 and POTS in 2010 I think, but had been trying for diagnosis since around 1990. I had the same symptoms then as I do now, just took getting a doctor who knew about dysautonomia for official diagnosis. 

Yes, most of the doctors think it is the dysautonomia, but a few still want to check out possible seizure activity or TIA's. I have a past history of both seizure like episodes and DVT/TIA's so they will not say dysautonomia until these have been ruled out. I am learning to tell my doctors any new or changing issues because it could be the thing that gives them that light bulb moment. 

So sorry you are going through this, I have had similar episodes and my doctors are still trying to figure out what is happening/going on. Strange that you mention it happening when you were watching TV, mine happens almost 85-90 percent of the time while I am relaxed watching TV. Have had it happen a few times with friends visiting. Doctors are looking at my blood pressure, NE levels, body position, what I was doing earlier in day...even possible seizure activity or TIA pretty much anything they can think of. It freaks me out also, my kids when they were still at home called it my zoiding out episodes. Wish I could give you the answer to what is happening, but know that you are not alone. I will post if I get any ideas or answers from my doctors. Hopefully someone else on the forum will have some experience and ideas on this.