kayjay

Jana- I had someone comming in every week. If you can... do it! I feel a little silly laying in bed when some one cleans but they are happy to have the work... I sometimes watch a dvd with head phones on on take a nap.

Just don't feel like you have to justify how you spend your money... also we are not LAZY. I have to tell myself that !!! Also don't spend the time you have feeling well cleaning!

Household help never does as good of a job as you do anyway. On Friday our cleaning person came, Saturday I washed the outside of my kitchen cabs. You can always find chores if you miss them!! HA

Hello all- Just wanted to know if any of you have taken lyrica and if so what do you think of it. I hate to take a new med but I really trust my dr and he is convinced that I need to try it.

He would like to change some of my other meds too but not right now. I have been dealing with the pain but I am hoping I wont have to sleep as much. Let me know what you think if you have taken this please! kari

funny you should ask. I just got diagnosed today. My dr. is adding lyrica to the meds I am on. Hopefully I will have less pain but really I need to not sleep all of the time! kari

TPO-AB (Thyroid Peroxidase Anti-bodies) and Antithyroglobulin Anti-bodies are usually high for Hashimoto's. I've had one endocrinologist completely ignore those tests, saying "that's what you get for testing," while another thinks that I will eventually go hypothyroid at some point. I had post-partum hypothyroidism and the evidence is coming in that women who have it post-partum are at increased risk for hypothyroidism later in life. Thyroid disorders are one of the most common endocrine disorders on the planet, if you had one, it wouldn't be because of ANS issues. However, once you have one autoimmune disease, you are more susceptible to getting another (if your POTS is autoimmune.)

I hope you get it figured out. Good endocrinologists are hard to find (I've been to enough of them!)

I do think my POTS is autoimmune and I also have endometriosis as well. Thanks for the help can you also share your symptoms? Do any of them sound like mine?

My children 9 and 11 got the shot a week ago and so far no side effects. I got my shot about a week and a half ago and have also done o.k. with it.

My children are pretty healthy kids but I just wanted to let other moms out there know they did not even get a slight fever, headache or any other side effect with the shot. kari

Hi everyone,

I've been diagnosed with lyme disease and tentatively with dysautonomia.

My heart rate can go from 50 bpm to 140 bpm in a matter of a second. Can anyone else relate?

Welcome.... but sorry you have to be here. yes My heart does that and I take a beta blocker! I wear a heart rate monitor when I think of it and I have seen my heart rate go from 38 to 112 in just seconds.

Also my rate has recently gone as high as 200... funny though when I am on my recumbent bike exercising it is fine!

I have a question for you.... Lyme is very common in our area (my dogs, hubby, mom, brother and nephew have had it). How did you get diagnosed? did you have a rash? I have dysautonomia but I think I have something else going on. Would you mind sharing your Lyme symptoms?

You have found a great place. I am pretty new here as well and I have learned a ton from the caring people on this site. I am glad you found it too- Kari

Stuff like Sjogren's or SLE (Lupus) can zap multiple things and present in various orders (Sjogren's does not always hit the eye/saliva first)... they're also auto-immune like Hashimoto's. They can include at least a few of your symptoms. Both are "very long diagnoses" averaging 7 and 10 years respectively, if memory serves. Could give them a quick overview and see if you happen to find a couple other matching symptoms or risk-factors. Even if they don't match really well, they can be things to keep on the back-burner as possibilities.

They can include neuropathy... hence ANS damage/dysfunction. Of course, many other things can as well, as you already know If some testing comes up, it might be somewhat convenient to "widen the scope" and include seeking markers for these.

(Hair-loss + autonomic/O.H./O.I. makes me think Addisons... but I have a hairline trigger on that and you say your hormones are ok, so not likely

Erik- thanks for the input- Hopkins thought I had Lupus 6 years ago but they spun out my ana cell what ever that means and didn't know what the cells were. (just a strange speckled pattern). I am going to look of addisons and Sjogrens/.

My Rheumatogist is getting a specific blood test for me for Hashimoto's - I think it's a Thyroid ANA. She said the regular Thyroid Function I had done wasn't enough.

The main reasons, I think, are my body aches and I've weirdly lost hair in my outer eyebrow. I now have to really fix my eyebrows everyday. :/ It bothers me.

So you may want to see if you can either see a Rheum or get one of these tests. At least it's a start!

I think I am going to ask for this as well. My eyebrows are patchy- weird.

Have you seen infectious disease people?

My white blood cell count is normal- but I do think I should be checked for lyme. When I first got sick years ago I was tested for everything.

Can Anyone tell me more about Hashimotos?

hello all, My diagnosis of Pots was confirmed at the Mayo clinic so I know that I have but I feel like I may have something else.

I usually have a slight temp- under 100. I get cold very easily ( I wear my down coat indoors)

I have major hair loss (also in my eyebrows)

I have very heavy periods with bleeding in between (on and off birth control)

I have pain though out my body- also slight sore throat and sometimes trouble swallowing.

sometimes I have night sweats.

I have IBS sometimes.

I sleep all night and could sleep most of the day. I really can only do 1 thing a day then I have to sleep.

I am treating my POTS and my heart rate issues are definitly better.

I am seeing my GP on Monday and wanted to know if anyone had any suggestions about other things I should be tested for. In my gut I feel like there is something more then POTS going on with me ( I am 36 and my hormone levels are good so I don't think it could be menapause related). Thanks kari

I think I have Fibromyalgia but I never tried to get diagnosed because for me the pain is not the worst of my problems (excluding migraines). I have whole body pain every day- I notice it more when I am less active. Massage helps when I can tolerate it- sometimes it hurts too much. I also try to stretch- doesn't really help the pain but it does "feel good".

I would love to know what helps others... but i don't want to take anymore meds.

Funny - right now i have this! Sometimes is goes away entirely but last winter I had this problem every day. It felt like the "morning sickness" that I had with my first pregancy. I eat saltines and cheese sticks.

Last night i had a can of chicken noodle soup. I don't think it really helps me to eat these things- It just is a placebo effect.

I feel your pain. I was always thin but when I go sick at first I sickly skinny. Now that I am on beta blockers, hormone pills, and Lexapro- I am quite a bit chubbier. Good thing I have to wear compression!!

One thing that I am doing is thinking about not gaining weight rather then losing it. If I can keep my weight where it is on these meds and unable to exercise much... I will have to be happy with that.

Another thing that is hard for me is that I have never been one to "drink" my calories. Easy for us to do with pots- Gatorade is so loaded with calories.

I am trying pay attention to my calories b/c that is something I can control. I am trying to put salt on healthy foods- instead of eating salty food is you know what I mean.

Don't be too hard on yourself- consider the big picture- maintaining you weight can count as a success.

Although I do think any vaccine/medication etc that you put into your body carries with it some risk.. I think the real problem is our legal system. No one wants to get sued! Also in this case the shots are free and the powers that be want to cover themselves.

With that said my children and I both got the H1N1 shot this year but I will not get them the regular flu shot. They don't have any underlying medical problems and I just don't think they need it. I got both however.

Just mop

Hi Rene~

Webmd.com has a lot of information about Taurine under it's drug and supplement tab. All of the sources I looked at implied that Taurine is similar to an amino acid, and that it would help with protection of your heart and also bring hypertension down. It's been proven safe in studies of up to one year. I think the only uncertainty about it's safety is in longer-term usage. It sounds like this may be a good option for you.

Good luck and let us know how it works for you!

Jana

Rene- I think Jana makes a lot of sense. When I went to see a holistic dr. it was a mess. I agree with the concept though.

Just make sure that your meds - if you take anything - don't interact. My one thought is maybe you could take more taurine though food (if you are worried). That way you really could not take to much... this comming from a girl who is taking CoQ10 2times a day with meds!!

One other thought. I was told that I really don't have a High Blood Pressure problems (just hyperadergenic POTS). I was eating celery and drinking cranberry juice wich was the wrong thing!!!!

I have to say with Dysautonimia I would not let any one treat me for High Blood Pressure. Mayo clinic told me this was a symptom not a problem. I would never want anyone of us to take a diuretic ( natural or not)!

Can you tell us how she is doing? kari

In my case having two became a help because they have each other to play with (and fight with)! I did think I was not going to live when my 2nd was born- My blood pressure just bottomed out- ( now I know why) anyway I knew then that I was done with two.

If I had been diagnosed, I would have better known how to take care of myself. Overall my second pregnancy was better then the first.

So what's the consensus here? Should POTSies get the H1N1 shot or the flu shot? I got the flu shot years ago before being diagnosed.

I got my shot on Friday (H1N1). I got the regular flu shot about a month ago. My children are getting the spray tomorrow.

Fevers are bad for us so that's one reason to get the shot. Also I have had pneumonia in the past- i don't want it again.

When I get sick... it is really bad. I'd rather have the flu shot then take the extra meds I might need if I got sick.

Also my ob/gyn gave me the shot. It was free. They have it b/c pregnant women are high risk.

Anyway, I am all for the shot. I have enough physical problems without a flu- in addition I think some of the worse flares I have had were set off by drug reactions or from illness. kari

Hello to you... no I have not been checked for Lyme.. It is on my list though, My hubby, mom, dad, brother, nephew, and dog have had it.

Those I know that have had lyme have been suddenly very sick. Even the dog. I have a chronic problem. I am going to be checked for lyme next week but Lyme is caused by a bacteria and I think I would be better off but more actutely sick with lyme.

I do have really High Cortisol. I assumed it was from hyperadergenic (sorry about the spelling I have a mental block) POTS. It is a stress hormone and as my hair is falling out I will admit that hyperadrenic POTS is very stressful! Sorry if this does not make sense... I am not having a great day but I know what I mean to say! Kari

Daisy, the only person I know who had this done (at the cleaveland clinic) had it done 3 years ago in her early 40s. She did really well for 2 years and now really regrets it.

She can't undo it and she is now worse off then she was before. Please consider a second opinion with a Neurologist. Cardios sometimes forget that Pots really is a brain problem with heart symptoms.

The POTS clinic At mayo (rochester) recommend that you never have this done. Good luck with this major decision. Kari

Daisy, the only person I know who had this done (at the cleaveland clinic) had it done 4 years ago in her early 40s. She did really well for 2 years and now really regrets it.

She first had an ablation, then later a "full" ablation and a pacemaker.

She can't undo it and she is now worse off then she was before. Please consider a second opinion with a Neurologist. Cadios sometimes forget that Pots really is a brain problem with heart symptoms.

The POTS clinic At mayo (rochester) recommend that you never have this done. Good luck with this major decision. Kari

Dizzy-this only happens to me during an accute flare. Right now I just have run to the bathroom problems every morning or if I eat too much at a time.

One thing I try to do when I have bowel problems for any length of time I take a probiotic. It does not help the dysautonomia problems, but I feel like when everything is "flushing out" (sorry to be so gross) all of the good stuff must be going too.

I used to have nausea- really on have it now when I bend over too much- then I can really puke!

I hope that you feel better soon- I will say I think compression and drinking things other then water have really helped me. Sounds weird but V8 kinda settles my stomach.

FEEL BETTER!

maybe I will sound crazy. .. but school are the main breeding ground of this thing. I wish they would close them all for a week and allow anyone who wants to get the vaccine have it. I am like you ...even a cold is too much for me!

Most people are too selfish when they are sick. Things got really out of hand in my daughter's room because one child kept comming in sick. I feel so sorry for that little boy. Who wants to be sent to school with a fever.

The sad fact is though things like that ensure the rapid spread of germs.

good luck to you and thanks for your reply to my message.

Grey, Klonopin is a drug. It is a nervous system depressant. I take it at bedtime. If I don't take it I wake up with Terror. I feel like I can't breathe. In my situation I think the adrenal surges I get at night (when I flip over) cause the terrors. When I wake up I feel like I a m going to die. I have to tell you that I enjoy not having these. I don't really have a certain dream... just more wake up in a major panic. Sometimes my children are being hurt, sometimes I am sufficating or being chased. Usually I just remember the fear not any thoughts.

I asked my Dr. for a script for Klonopin after reading about it's use in the treatment for chronic fatigue syndrome. I plan on taking until I am out of this flare!

I just wanted to let everyone know that 11 children were out sick today in my daughter's 5th grade classroom and 3 more were sent home during the school day.

I would love to hear from those of you who has gotten over this "bug" and let me know how you are doing. I am bracing myself.... but I am worried b/c like many of you when I get sick... I get REALLY sick. I can't take drugs like ADVIL and I am not in the best of health right now.

I am keeping her home tomorrow and hoping that her classroom gets cleaned out over the weekend! kari