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Hi Ontrack and welcome to the family. There is so much good information on the website and here at the forum that you will probably find others who have exactly the same experiences you do. Somehow, that is always comforting!

I had trouble with Florinef but stuck with it for 3 years, constantly trying to find the right dosage for me. It made my bp go all over the place and dizziness within my head when on the higher dosage. Also, I had this pressure like someone INside my head was pushing a brick out the back and the fullness you experience. 3 weeks after stopping I realized that it had also been responsible for the wired 24/7 feeling I had. The problem for me is that I really need something that will do what Florinef does without the side effects. It is so hard to try to "manually' regulate fluids and electrolytes. good luck and I hope maybe it can benefit your situation.

Nina, it is really hear you sounding back to your old self. Must feel good to have more of your pre vacation checklist items completed. Keep thinking summer!

Hi Steph, wishing you a speedy recovery from this surgery. All the best. take good care of yourself.

I use Tiger balm but have never made a connection with insomnia. Will have to pay more attention to see if it happens to me. I have insomnia so often it is hard to know why!

Since Pots I cannot tolerate antibiotics without a significant increase in POTS symptoms. Like Funnyfrog, I am also allergic to penicillin and sulfa so the choices are limited. What i did find is that after stopping Florinef after 3 years, the anitbiotics have not caused such a severe reaction for me. I think there must be a connection. good luck. I know how bad it is to try to take antibiotics you need when all they do is may you feel so much worse. Hope you feel better soon.

Nina, just time for a quick note to say be good to yourself while you are working through your list. Putting yourself frist has to be a priority. take care.

Ernie, that is wonderful news. Thanks for sharing!

Morgan, this is the worst of the worst. I'm glad you have your doctor on your side. That is encouraging. Go get 'em girl!

After 6 days of icy cold, my body temp has returned to its norm of 97.5 and I have come out of the blankets. ALso nausea is gone so I am wondering if low temp is related to nausea??? My weird body went from icy cold to having the burning sensation in my feet. I hate that feeling too but fortunately it left after just one day. So, I am back to my POTS-normal self. thanks for all the input.

Dawn, I am just wondering how you are doing?

Danelle, first let me say my heart goes out to your son. It is probably additionally scary for him to receive the dx because he has watched you struggle to manage with POTS. Also, I am sure it is much worse for you to see your son sick that to be sick yourself. I can certainly understand your concern about all the med changes. While I can't give advice on what you and he should do, I will gladly share my experience. At the onset on POTS I was started on multiple meds at the same time and when I had what I felt were terrible reactions, we never knew which was causing them. so the doctors told me to stay on them and see if my body would adjust over 2 months. I should have stood firm not to do that but I was just too sick and thought they knew best. Now, based on my experience alone, I will not try multiple new meds at one time. I have not tried SSRIs so I can't speak to them except to say I know others here have posted that they often have side effects while ramping up to the full dosage. It does seem a little strange to be on 2 at once. Regarding your son's anxiety, do you think stimulation is a contributing factor? I didn't learn this about myself until a year after onset. But, any stimulation worsens my condition for which I take small doses of Ativan. I am imagining his prom with all the noise, music, and just general "busyiness". Maybe he can make sure there is a place he can slip away to if/when he starts to feel bad. Just quieting the ANS can help in situation like this. I know you are faced with a difficult decision and it is great that you have a doctor who is working so hard on your behalf but in the end, he doesn't have the experience you have as someone who suffers from POTS. I don't think you should worry about ruining the relationship, especially if all you are contemplating is going slower on introducing new meds. If you are still in question, call him back and tell him what approach YOU would like to take and see if he can support you. I bet he will. good luck.

Merrill, I can relate to the yoga poses and what appears to be very easy UNTIL I try it!! I work with an instructor 1-on-1 so that she can modify the poses to my abilities and then we gradually work up to the regular poses. I know the one you are talking about and I couldn't do it in the beginning....does that make you feel any better? Hope so, cuz after a year, I CAN do it...YEAH! You will too just don't give up. I am very proud of you for going back in and finishing. A true WEENIE would NOT have gone back. So be gentle on yourself. EM, I had never heard the term recumbent before I started PT several years ago. I really like riding it but like Morgan I have to start with only a few minutes...but I refuse to be called a weenie!!!!!!!!

SusieQ, welcome to the neighborhood and I look forward to hearing more about your own experiences. Sounds like you have your hands full with work and small children! There are others here with a similar lifestyles so I know you will enjoy getting to know everyone.

Well, I am from Texas and guess what, people all think we wear cowboy boots and ten gallon hats and say things like "ahhh, shucks"!!! Corina, it is so good to hear you sounding light hearted. Your spirit is definitely in a better place and I hope that means you are feeling a little better these days. Now don't let anyone else here read this...but... I am probably one of a very few people who didn't like Wizard of Oz...scared me as a little kid....but remember not a word to Nina or Morgan!! btw, WHAT is this post supposed to be about???? (LOL)

OK guys, I am testing my memory here cuz I am too tired to do a search but this confusion with TB has come up before and someone here did do an internet search and I recall that the TB variety has two "tt"s as in POTTS. I am like Nina in that I do not use POTS any more in working with the doctors or ER. The ER can never find POTS in their computers but they always seem to find something about dysautonomia.

Hey Morgan, just wanted to say hi and that I am not a big fan of the MRI capsule either. I think a little med is a good thing before shake, rattle and rolling! I am wondering if your gyn thought you were a little tipsy!!

Nina, I agree with DawnA that most healthy individuals would find your schedule overwhelming! Also, I remember that the time approaching vacation can be the most hectic cuz you have so much left to get done and when you get to vacation, you are ready to collapse the first week. So, hang in there and do the best you can to pace yourself. I understand the part about the meds. I think those of us with chronic illnesses are very sensitive to the "idea" of needing certain meds. Why that is I am not so sure but I know I can relate. It is easy to say "don't go there" in thinking it is bad but much harder to do so I will just say "don't go there for too long and move on". Perhaps when spring finally arrives in your part of the country it will lift your spirits as well and you can visit your garden. take care Nina and know we are all thinking of you and understand your occasional absence.

You guys are too fancy for me! My husband bought mine at a sporting goods store about 3 years ago and it was under $200. The brand is Life Gear. What I like is it is simple and that means no chest strap. It reads the pulse from the hands. I already had a separate chest strap so didn't want to pay more especially for something I wasn't sure I would be able to use. Have won the chest strap to check the accuracy of the bike from time to time and they are always in sync so no problem. Since I am the only one who uses it the seat never needs moving. It might be difficult cuz it is manual but again I didn't want to spend a lot of money. I go in spurts of riding but can never do 2 days in a row due to my exercise intolerance. I try to do 3 times a week and build up but by the time I reach 5 weeks, the intolerance drops me in the potshole. So, I wait a month and then start up again. I definitely like having the bike and even a few minutes makes me feel good about doing SOMEthing! btw, my PT had me start at 3 minutes a day several years ago and each time I restart, that's where I begin. My exercise intolerance is delayed by hours or until the next day so I have to be careful not to unknowingly do to much. good luck riding Merrill!

Gena, I don't fall in the hole for all the reasons you stated but insomnia is one of the worst for me and if I go several days with really poor to no sleep, I am in trouble. All my symptoms get worse. Falling asleep can take hours for me and I feel like I have tried everything. Some nite's my system is just so wired it is maddening! A 1/2 pill of Ativan will help me sleep at least 4-5 hours but I am resistant to take every nite. My husband and doctor think I am nuts not to take...and maybe I am but I just don't want my system to think it must have it to sleep. I asked my (good) doctor a week ago about what he thought of me trying Ambien and he very clearly said "NO"! He would rather I use the Ativan than Ambien and he tells me every visit that I do not have the type personality to become addicted to Ativan and to TRY it nightly, but I just won't do it. Stubborn me!

Roselover, I am like you. Mornings are not that good when I first wake up. For me, I have learned with time that the most critical reason is fluids. I keep a bottle of salted water by my bed and before getting up for the day drink 16 to 20 ounces. My busband often brings me hot broth and that works really well because it is loaded with sodium. In addition to low volume, my sodium can drop very much over night. I also find that by drinking a cup of broth late in the evening it helps me even if late fluids cause me to get up in the night to go to the bathroom. They tried to do a sleep thing on me but I had insomnia!!

Isn't it amazing how few doctors have heard of POTS, much less seen a patient with the condition? I am so glad you will have a willing doctor and I hope he can help you. One thing for sure is he will learn a lot from YOU! good luck.

Amy, sorry you are having this pain and I know that the poorer the sleep, the worse the next day will be. I had muscle pain in my calves for several years and the doctor was concerned enough to do ultrasound for clots (normal thankfully). Also, my potassium levels have always been ok. Last year a nutritionist told me to try magnesium supplements and after a few days I stopped having the pain.

BW, I am so glad that this is working for you. how wonderful! A few years ago, my PT tried the tens unit on me and at the lowest level it overstimulated my system and I went into full POTS overload. It was not good. Just goes to show how different we all are when it comes to treatments.

I have trouble with nausea but have never been able to take any meds without making other symptoms worse. After the first year I found the nausea eased up. Also I have a very restricted diet to help my GI system and I think that helps as well.