kayjay

Hi I had both shots and worried about a reaction. I made out ok. I am in what I hope is the tale end of my worst flare ever (started last March). I have had bad reactions to meds that have landed me in the hospital.

The Mayo clinic told me it was better for me to have the shot than to get a high fever. It does trigger an immune response so I think it can make you feel bad. After one of the shots i slept more then usual a few days later and one night I woke up with a bad night sweat (H1N1). I'm still glad I got it b/c 2 heathy friends have had complications from the flu and my brother was sick for 2 weeks... and still coughing. Hope you're feeling better soon!

Thanks for the info... I am grateful. I wanted Mayo to change my meds - I have read that SNRI's can give you more energy- I have had problems with hypertension due to my POTS... so firewatcher I think I will not press the issue.

I just need a little energy to be a better wife/mom... but sounds like a snri might not be safe for me.

I have POTS, fibro, CFS, IBS and allergies.... I think they are all related. They all happened at the same time (maybe allergies first but I don't think so). When I am worse with one set of symptoms I have issues with another set!... Remember with these sydromes they are a "group of syptoms" . In my mind i have one thing wrong with me that caused all of these problems and the overlap is due to Dr.'s labels.

I spoke with mayo clinic today and was told that POTS,Fibro, and CFS often go together.- LUCKY US!

I have Hyper POTS and was put on lexapro before my official diagnosis at mayo. Do any of you with hyperadergenic pots take a SNRI? I have read that they are better for my kind of pots then SSRI?

Any input is helpful. Lexapro is doing nothing and I am so tired all of the time I don't want to take anything that is not working.... Oops time for my 10:00 nap.... sad but true. THANK YOU

I have tried b12 ( and everything else). My dr. told me that b12 is a scam (really he said something in yiddish but that's what he meant).

I think the shots can help with energy if you are deficient- but I can't say the oral stuff does any good. I am a big believer in vitamins. I take them every day and think that they are important for my overall health- meaning I would be in worse shape without them. I know that I need to take iron for example.

Good luck to you- I am learning that so much of what is on the internet is bunk and I really have learned to trust the dr. i have now ( so many dr's have NOT helped me). So I am not for b12 but at the same time is is not harmful.. just a potential waste of money.

Hi- I have had many MRI"S with contrast and never had a problem with the dye. I do have a lot of allergies and have had reactions to meds that were very serious ( now I have an epi pen). I always worry about the dye but it has been fine.

remember they are ready for the rare person that comes in there and does react. having the MRI is so much safer then a CAT scan. Good luck... I know as a mother this must be so hard on you!

I never feel good. at the least I always have a headache. I also have other pain. I always have awful fatigue.

I think most of us try to make do and figure out how to get the most out of our lives. I have to have help with cleaning. I can't go to the store alone.

I had one day last week ( election day) when I tried to cat pretty normal. My children were home and I went to vote (a 4 min drive) they wanted to go to McDonalds, and we stopped at the market to get dinner items and tea bags (about 9 items and my children are old enough to be good helpers. Anyway the next day I could not get out of bed to dress and take them to the bus stop. I had to call my mom and ask for help. As the day went on I did a little better... but if I pretend to be normal I pay for it the next day (or two).

With that said I make myself do yoga 2 times a week and I ride my recumbent bike for 20 min as I am able (my goal is 3-5 times a week).

Anyway you are not alone but I am sorry for your suffering! Kari

I was never able to get on their site. Let me know if you have success.

Just want you to know I am praying for you and your family. Sorry that this is what you have to deal with but your son is blessed to have a MAMA BEAR!- sending this with love kari

Hello. I know 2nd post in a row. Have anyone tried neurofeedback?

Please let me know what you think.

I'm about ready to try anything but I don't want to be a fool! Thanks

I too have a hard time with this. My husband has awayeds pressure me to donate blood. I like to help others and I know that the blood banks need disease-free blood ... but for for the past 11 years I have avoided it... He always donates... I don't and frankly I am the kinder person .

Now i know why! My body was trying to protect itself. For some reason I would tell my husband that I don't think it is good for me.

When I was at NIH I think they used heating pads or something like that to try to squeeze out my blood.

At least vampires won't want us. HAHA

I guess I'll just have to be an organ donor....if anyone will want them!!

Hello all, I am wondering if you have any input about heat rate. My resting hr is around 42 and I once had a horrible low of 28 in walmart with my mom ( I felt like junk).

Anyway I am on a beta blocker. I cut the am dose in half after the walmart incident (about 10 days ago).

In next week I'm thinking I'll go back to one pill a day.

Has this happend to anyone else? I still get huge bump ups. I was having.... well let's call it a heated Discussion with my husband and my heart rate went from 45 to 147. It does not stay high or low. JUST seems weird to have 100pt swings when I am on meds! Thanks for imput!

I'm with Jana- still thinking of you. Please update when you can. I hope you are holding up ok yourself. Hang in there mom! - kari

So many of you have great names here. I think I was too foggy to think of a good one when I joined- Now I wish I had a " fun name" ....

Hello to all- I was glad to see this post because I always want good info. I am 36 and was just diagnosed this year. I have had problems with dysautonomia for at least 11 years.

Funny, when i went to the Mayo clinic the nurse told me that I would get better because "we don't see women in their 50's and 60's with POTS".

That confused me because the neurologist told me that I could do better--- but that I would most likely have this condition for the rest of my life.

Now because of all of you... I know who to believe.

I think many of us, regardless of age, realize after 10 years or so of dr. visits that they don't have all of the answers and we learn to just do the best that we can.

It seems to me that the people that really recover from POTS are those who develop it as teens perhaps during a growth spurt.

Anyway... now I know that moving our laundry room to the main floor is a good idea. I am hopeful but I don't want to have false hope.

Thanks- kari

Goof for you!!! It was my hubby's 20th this year. We didn't go but I am in hiding... I am glad you are not!! I would say... pick what makes you feel the most pretty. I know if I think I look good I have a good time.

HAVE A GREAT TIME! kayjay And tell us which one you picked!

Cat lady- I read a book about gluten free this summer ( I don't have celiac but I'll read anything). I don't remember the name of the book but it was by Elizabeth Hasselbeck ( I don't know how to spell her name).

It was pretty comprehensive in terms of explaining the disease and it had a lot of practical information. I thought that it was an interesting book. I might be a good resource for you because what you have to do can completely affect your entire lifestyle.

Specific products are recommended in the book and there are list of things to avoid. I think that there are recipies but I am not sure- I read it in the pool area when my children were swimming so it did not get my full attention- but I learned a lot from it.

I know you must feel bummed out but I am hopeful that you are getting closer to being healthy!!!! Karry

I take them. I don't notice that they help or hurt but I am on meds so I would not notice.

I take them to protect my heart. I worry that my heart has had to work too hard for too long so I take this and a baby asprin daily.

funny to me all you writers- I started as a journalism major but then got into social work after working for hospice and then special education-

Speaking of brain fog- last night we went to a friends house for Halloween. I was telling two of my former students about our dog. I forgot that they came to my house in August and met my dog. I really don't remember the visit. Then I realized I don't really remember my birthday this year. I had to ask my hubby what he got me (a kindle that I use daily)- and I am not sure if I even had a cake. Very scary!!!

The other thing that is really getting to me is that I replace words with unrelated words- for example yesterday I told my son to get his laundry off of the book- he said "you mean the green chair"!!!

My spelling has always been bad- but it is so bad now I "dumb down" my word choices when I am writing- Funny/sad for someone who wanted to be a playwright when I was a kid!

Now the best I can do is lay in bed with my mom's old laptop and write things for my children- I am about on their level at this point!

I wonder what would happen in someone like me who has been sick for 11 years. I have had every symptom Ram mentions- but now things seem to be more chronic- less acute- interesting- Wonder if you can inhale this virus?

H

1. With POTS, do you think you will be able to do a long hike without making your symptoms worse? Sometimes- I taught for a few years with POTS- I used to bike and run on mu eliptical for long times.

2. With POTS, does Xanax-type medication make your symptoms get a lot better or even go away? Not sure Klonopin makes me FEEL better

3. With POTS, is it possible to work out 1-2 hours a day and feel fine during the workout? Does cardio or weights make you worse? A few years ago I might have - not now

4. With POTS, on days where you feel bad even when sitting or lying down, does standing up and walking around make it even worse? I feel the need to move when I have really LOW bp or if I am having an adrenal surge

5. With POTS, do stressful events or situations make your symptoms worse? yes- i overreact

YAZ caused a huge Pots flare for me. If you have hyperadergenic POTS YAZ can cause real problems.

Good luck to you.

I think thankful has a point. I was so undiagnosed for so long and I kept pushing myself- I could have really hurt myself. I fainted once on my eliptical, and i can't imagine how hard my heart was working.

I have to be careful with exercise b/c I don't want my adrenals to kick in ...ever!!

Pilates is good for me and I do very light weights... I just know I have had flares from pushing too hard. before I was diagnosed I worried that I was lazy- just couldn't get my act together.

I had a dvd with jumping jacks on it... a jillian michaels dvd.. it about killed me.. but I kept at it like a fool b/c i had no idea tha tI should never try to do jumping jacks.

Also I do use weight... but once I carried them upstairs and had a real problem!. Mayo clinic said no "loads" up stairs. We are moving our laundry room out of the basement for this reason!

I also use a strap to stretch my hamstrings and do leg circles and such even laying down when my hubby is watching tv.

Finally got on facebook. Maybe some of you could pm me? Right now I have 3 friends! Can I become a "fan" of dinet? Kari

Hello all- thank you for your input about Lyrica. I wanted to let everyone know that it is helping me exercise. this am I went to a yoga class with my mom and it was my best class yet.

Also it is helping a little with my pain- I can tell b/c when it wears off- I realize how much i hurt!

Also I think anyone with constipation shared that this drug gave them problems. i have IBS and i think the lyrica may be helping this. It has been less then a week so I will update when I have been taking it for 2 weeks.

I do think that it is making me more hungry- so I am planing what I am going to eat to try to prevent weight gain- also if I am more active that will help. The first 3 days it made me feel more tired- now I just feel a little better.

Hope this helps someone else- kari

I also live very near this doctor- Is his treatment more effective than massage or yoga?