potsgirl

I am a fainter and also have a pacemaker. The pacemaker does help with my bradycardia, and it keeps my HR from going below 60, but I still faint with it. It doesn't stop my BP from plummeting when I get up or stand too long. I think you need to talk to your doctor and tell him that you must have something that will be as reliable as possible as you have children to take care of. He/She should be able to give you the best answer...

Take care,

Jana

I'm sorry that your 13 year-old daughter is having so many problems. That's such a tough age anyway. I do get visual snow and blurry vision, and can't stand bright lights or 'busy' patterns. They tend to give me migraines.

I think that Firewatcher had some good suggestions. Perhaps being by a window with natural light would be the best bet, so she doesn't have to 'stand out' from the others by wearing sunglasses indoors. However, if that's what works, I'd go for it.

Best of luck

Jana

Hi Aubrey Jane,

Welcome to the forum! I'm in Arizona, so I'm feeling the heat with you...It seems as if summer will never end...

1. Do cold and the flu et cetera make your symptoms worse? Especially the tachycardia?

Definitely. Thankfully, I don't pick these up too often - probably because I'm in the house so much.

2. Have any of you had recovery and relapses in POTS (I feel like I have)?

Sometime I'll have a period of time where I feel human and have more energy, but that's not very often.

3. Without getting to personal, Do any of you take the birth control pill without any problems?

Yes, I take Reclipsen, and it works very well for me.

4. I have read quite a few of you say you have Ehlers-Danlos syndrome. Is this a concurrent disease with POTS (I have never had it mentioned to me)?

Unfamiliar with this syndrome. I have severe OI/POTS and other issues.

5. Do any of your have problems with maintaining your blood sugar? Or, have your tachycardia exacerbated by eating to much sugar?

I have to eat every 3 hours or so or my symptoms get worse, and I feel very sick.

6. Any good drink recipes for keep up your blood volume (I am getting so sick of gatorade!)?

I've started drinking a hydration supplement similar to Gatorade called NUUN. You can find these tablets in sporting goods stores (Summit Hut, REI, and online). They're lighter-tasting and I hated Gatorade. Also good is 'Elixir' by 'Camelbak'. It tastes like a lighter version of Kool-Aid. Both are tabs, so you can carry them with you easily and just drop into water. Low cal, low sugar.

Looking forward to have you as part of our group.

Cheers,

Jana

Welcome to the forum! I'm glad that you found us and that you got up the nerve to post. You'll find lots of information here, and it sounds like you'll be seeing a good doctor at the Cleveland Clinic. It's a great place.

I'm sorry you had to go through so much suffering and trauma during what is a difficult time in your life - getting that master's degree. Kudos to you for finishing! I got mine before I got sick, so I was very lucky. What I miss most is that I had what I considered my 'dream job' in anthro/archaeology here in Tucson and had to leave work a little over two years ago.

I'm now on disability, and I hate not being able to be really active anymore! You may want to consider applying for federal disability if you're too sick to work. It's a long process, and if you're not feeling much better over the next year or two, you'll be glad you have it. BUT, let's also keep hoping that you're going to feel much better soon, and that the CC can help get you more stable.

Cheers,

Jana

I just got the regular flu shot, and it sounds like most places won't have the H1N1 vaccine for another couple of weeks. Please remember, the shots take about two weeks to take effect after one gets them.

Jana

Radha,

It sounds as if you really need to go see an eye doctor. Is there any way to get you there via wheelchair and help, or can you perhaps find a doctor willing to make a house call? I know that's really hard to find these days, but they do exist. To really get a good diagnosis though, I think you'd need to get to an office with the right machinery. Lots of luck to you, and hope you figure it out soon.

Cheers,

Jana

Wow! How terrific for you. Even if it doesn't last too much longer, at least you're having these days now and feeling good! I would be so happy if I could have a week symptom-free. I really hope it keeps going and you stay feeling good!

Cheers,

Jana

Hello~

You've gotten a couple of great answers so far, and I really can't think of much else to add, except welcome to the forum! I'm looking forward to your contributions, and I'm sure you'll find a lot of good support here, along with answers to other questions you may have.

Cheers,

Jana

On the days that I'm really feeling bad, especially overtired, I get this type of vision. After a couple nights of poor sleep, I was exhausted yesterday, but had to do a few errands and had a doctor's appointment (that turned into a two-hour soiree). My vision was very poor. Things looked 'surreal' and I couldn't focus on anything. I definitely should not have been out driving, but sometimes you have no choice. I hate those days.

Jana

I'm sorry that you're having so many GI issues. Hopefully they'll figure out what's going on through all of this testing, and find the best treatment for you. Most of my problems are the opposite of yours - I have major constipation and am almost constantly bloated. If I don't take my 2 Senna's every night and morning, I don't have a bowel movement at all. If I try to go off the Senna, or try another form of stool softener, I won't go for up to 10 or more days in a row - yikes!

I hope you find some relief soon.

Take care,

Jana

As soon as I realized I could no longer work my FT job, which I loved, I filed for disability...I wasn't sure I really would need it, but considered it a safety net if I couldn't make it back to work for a couple of years or more. If you decide to file, the sooner the better. I filed in August of 2007, and was approved by a judge in June, 2009. It does take approximately 2 years if you need to go to court. Federal disability almost always turns you down twice - you appeal the first time, and if you're turned down the second, you or your lawyer appeals and you wait for a court date. I really believe it's worth it to get a lawyer, even though they can take up to 25% of your backpay, which can be substantial.

I had long-term disability to help cover that time period, though. It kicked in at 66% of my old salary at 6 months. This is also where I got my health insurance, after 6 months of being on COBRA. Now that I have federal, I'll have MediCare starting December 1, which will be a big savings for us.

I decided that the very limited amount of energy I do have was best spent with family. My life had become just barely making it to work, coming back home, eating something, and falling into bed. It just wasn't worth it to me...

I'm sure you'll make the best decision for you. Please PM or email me if you'd like if you have more questions. Take care.

Cheers,

Jana

AG,

Do you mind me asking why they have to remove part of your colon? I have a lot of colon difficulties, also.

Thanks,

Jana

Bella,

I think it's time for bad things to stop happening to such a warm, wonderful lady as yourself. I am so sorry that you had that accident, and landed in the hospital yet again. Obviously, we need another guardian angel watching over you because of all the mischief you get into!

Please take good care of yourself, and as always, I'm thinking of and praying for you.

Jana

I agree - I think you should go to the ER to be seen if it's a severe pain that is new to you. Let us know how you're doing....

Take care,

Jana

I'm sorry you're having to endure so many tests right now. Oh, wouldn't it be great to never have to see another doctor? No more prodding, blood-letting, peeing, etc, etc! Hang in there, it sounds like you've got a good doctor.

My best,

Jana

That is certainly disheartening news. Let us know if she can be reached via Facebook or email. Also, being an Iowa, the town's name is actually "Prairie City".

Thanks for the update,

Jana

I got a referral from my neurologist to see the subspeciality group for ANS at Rochester. I also requested to see Dr. Brent Goodman - don't worry, making an appointment with one doctor will still get you into the 'team' approach network. I waited about one month, and we went in early March. If you go, you're going to love the underground network of tunnels that gets you around, especially if you go when it's cold out, like we did. We stayed in a hotel connected to the main building. Very nice.

Cheers,

Jana

There are many sites on the Internet that can help you determine your ideal heart rate zone while you're working out. At www.bodyforlife2.com/max_heart_rate.htm, all you need is to put in your gender, age, and resting heart rate and it'll give you ranges and your maximum heart rate. My doctor told me to stay in the 'easy' to 'moderate' zone. For example, I'm female, 47, resting heart rate of 60. When I work out, I try to hit about 70 - 75% of my max, or about 140-150 beats per minute. Others may need to be closer to 60%, depending on your conditioning level. Of course, quit exercising if you get too short of breath, have pain, and make sure your doctor approves.

I used to know the formula, but this site makes it easy. Good luck, and hope this helps.

Jana

Angela,

I go through bouts of tinnitus that drive me absolutely crazy, and also have the fullness in the ears. It seems to come and go. I can relate to how irritating it is! My doctor told me there was really not much to do about the tinnitus/fullness sensation. If anyone knows a solution, please write!

Cheers,

Jana

Thanks!

I've always been an easy bruiser...And if I carry bags over my arm that are heavy at all, I'll have the marks for hours after. I guess I 'indent' easily!

J

Hi Lisette~

Another big welcome to the forum! Thank you for sharing your very personal story with us. I am sorry you've had to go through such hardships in your life already. You'll find a lot of information and support here with us. There's almost always someone who's had a similar experience or symptoms that you've had. You will know you are not alone anymore. Hope to see you post often.

I have relatives from Germany/Switzerland, but haven't been back in way too long...

Cheers,

Jana

Hi Rene,

As you know, POTS messes with our central nervous system, and that controls things such as our temperature, breathing, etc. I would guess the increase in coldness/shivering is due to a surge in your POTS symptoms. This would also explain your more intense highs and lows of your BP and HR. Keep warm and be good to yourself. Eat enough, rest a lot, and hopefully this stage will pass soon!

You're a great person, so caring and kind - I hope you feel better soon.

Cheers,

Jana

Maxine,

May I please ask why you had the echo done? With some heart issues, you can have a decent EF and still have an underlying problem. Not to alarm you by any means, just feel the need to give you some more info if needed. Hope you're well!

Cheers,

Jana

Just a quick FYI: If you do have a gallbladder issue and they take it out, you'll probably do an outpatient and not have to stay overnight, but it's pretty painful for at least the first couple of days if not a week or so. You have to be very careful to eat bland foods for awhile, and you may not feel like going back to work for a week or more. I sure hope that's not it, but just want to let you know how it can be if it is your GB.

Best of luck, and keep us informed!

Jana