potsgirl

Devin,

All of this could be related to anxiety/depression if you haven't actually been diagnosed with POTS or some form of dysautonomia yet. What are your diagnoses? I know it's a cardinal sin to say it could be psychological, but I'm saying it may be that you have a form of dysautonomia where anxiety is a main component. Some people on the forum do. Please let us know what you've been diagnosed with so far, and we can help you out more.

I'm so sorry you're suffering so much with this. Things will get better for you, sometimes it just takes a little while. Hang in there!

Jana

My doctor believes that auto-immune diseases tend to bring on other auto-immune problems, and that's been the case for me so far. It takes time, and when new symptoms show up, you can have them tested. One belief is that if you have dysautonomia, you also probably have CFS and a possibility of developing fibromyalgia, too. I also have interstitial cystitis, and a chronic pain issue. My kidney function is low due to poor blood perfusion. I had to have my gallbladder out. I have ischemic areas (an abnormal amount) in my brain due to lack of blood flow - hence, 'brain fog'. But usually you don't find these things out immediately...they can develop over time, and perhaps you won't even get another illness. There are people on the boards like that, too.

Good luck!

Jana

I was diagnosed with POTS/OI and also have heart issues, (also have chronic low BP) and I can get out about 3-4 days a week for a couple of hours each time, if I'm not in a particularly bad spell. I walk for about half an hour if I can, then stop at TJ's or Fry's (both grocery stores) to pick up a few items or run another small errand. Stores are difficult for me because of all of the sensations, the noise, lights, too many people. I get out to a movie maybe once a month, eat out for lunch about the same. I get up about 6-6:30, take a nap after lunch, then am back in bed around 6, reading. I just hope that I can continue being at least this active! Do have a wheelchair for 'mall shopping' if needed.

Try your best to keep moving, even if it's just around the house, if it's safe.

Cheers,

Jana

Dear Daisy,

Yes, I was very nauseous after the surgery and for at least a week after....it slowly got better, but I was very careful about which foods I ate for a good two weeks, and I would get hit with nausea/diarrhea for almost 6 months sporadically after the surgery. It does get better, it just takes a long time for most people. My doctor had warned me that I might have problems like these for quite a while, because she still would have bad bouts between 6-12 months after the operation. Not ALL people react this strongly, though. Some breeze through it more quickly, but I would expect to be sore for about 2 weeks, and introduce new foods back into your diet very slowly.

I hope you're feeling better soon! You can always PM me if you'd like.

Jana

Hi Elfie,

I see more benefits with the choice of moving back home. If you took a class or two, or one online, you could try out a med or two (always best to try just one at a time so you know which med has which side effects) with your family around. You'd be closer to your doctor, and it would be more cost-effective if you lived at home for a while. Most importantly, they have the majors you know you want to get degrees in. I would guess you'd be busy enough that you wouldn't be hanging around the house all the much. Did you say you'd have privacy? If so, then I vote on you making the move.

Cheers,

Jana

I definitely get the shakiness, and while I usually don't stutter, I get a very 'low' and soft voice when I'm in a bad period. I'm with Maisie - these can be symptoms of POTS, but if they're new, check them out with your doc.

Cheers,

Jana

Wow, Janey~

That was an appointment and a half! I know there are many of us who suffer from GI issues with dysautonomia, so you're in good company. Good luck with your meds and feeling better soon. I have to go in to the gastro in two weeks, due to chronic constipation. I have to take 3-5 Senna a day or I won't go at all. I've gotten to 10/11 days without a bowel movement, and then have to head to the hospital for a major enema. I'm very worried as to what they'll find in my colonoscopy.

Please let us know how you're doing and what further actions they take. Take care of yourself!

Jana

I'm sorry that you had to go through that experience, especially from your mother. I can relate to that....Yesterday while I was on the phone with my mom, I dared bring up that my fatigue level had been worse recently, and her comment was that 'I needed to get a project to keep me busy'. She suffers from Parkinson's, and had some major back surgery 2 months ago that's she still in skilled nursing care for, and I think she needs to be the 'sick' one. It hurts, but I guess I can give her that much since she's 80 and in poor health.

I'm jumping in with the others who say that you're (we're) all part of a big, wonderful, supportive family here, and I'm sending positive thoughts and hugs - big bear hugs - your way.

Jana

Rachel,

I think a professional letter detailing what happened between you and the supervisor is the most succinct way to deal with the matter. I don't think I'd go into detail about your illness - that really shouldn't matter - except to let them know briefly how it effects you and your family. A copy to the teacher involved and the administrator of the place should do the trick. You should expect an apology from both of them.

I'm so sorry you had to deal with this, especially on a bad day! You and your family are living in a very difficult world, so of course your children will need extra patience and love.

Let us know if you write the letter and your results, please.

Best,

Jana

Hi Maisie,

I have to take some meds to help me fall asleep, and then I'm usually out for about 4-5 hours and toss and turn the rest of the night. I really would love about 9-10 hours, and know I would function better. I need to get in to have a sleep study done soon. It seems there are a lot of us who suffer from sleep apnea. I've been resisting because I'm usually asleep before the 8:00 appointment I would have for the sleep study! Not sure what to do about that...

Cheers,

Jana

Lisa,

Have you been checked for interstitial cystitis (IC)? I also go to the bathroom between 3-7 times a night, which makes it hard to get sleep, and was just diagnosed with IC. There are things you can take to help you if you have that....

Cheers,

Jana

Thanks, E!

Love the necklace idea!

How cool is this? Where did you get this equipment? If I remember right, you do this at home...Tell!

Hi Lissy~

They think my cardiomyopathy (dilated) was caused by a viral infection. I had recently moved to Arizona, and they have something called 'Valley Fever' here in the SW that some people catch when they move here...it's something in the soil. I still have it...It sounds like yours has gone away? Hope so!

Cheers,

Jana

I'm on both Paxil (15 mg) and Klonopin (.5 mg), and every time I tried to go off Klonopin I would have anxiety/panic attacks after about the 10th day. I could get down to .25 on the Klonopin, but after that, I just haven't been able to do it yet. I hope they're taking you off very slowly. And going off both at once - you're definitely a better woman than I!

Great job!

Jana

Daisy,

Good luck with your surgery. It's not bad, but expect to be pretty sore afterwards for a week or more. I couldn't do sit-ups for 6 weeks after surgery, and a lot of the food I had looked forward to eating made me very sick. Just take it slowly, and introduce small amounts of the foods that you used to eat into your diet over time. Everyone is different, but sometimes it can take months before your digestive track it back to normal. Not trying to freak you out - just want you to be aware so you don't suffer the consequences - like I did!

You'll do fine and will be so much happier without that pain.

Cheers,

Jana

I agree with Jeff K, although I had both the ultrasound and the Hida Scan, and nothing showed up on either test. We had a long post up not too long ago about gallbladder pain, and how something like 70% or women don't show any symptoms when their gallbladders are actually bad. I had pain in my central upper chest and to the left, pretty bad pain, and they ended up taking out my gallbladder and it was dead. Many problems solved. I'm not saying that's what it is, but I would keep that idea in the back of my head and do the Hida Scan to see what it shows.

Hope you feel better soon!

Jana

Hi Maisie,

I also have bradycardia with POTS/OI. My heart rate would go into the 30s, so I had a pacemaker implanted about three years ago. First I was diagnosed with that and cardiomyopathy, then about a year later with POTS/OI. It's not that common, especially to have it full-time. I've also had carpal tunnel syndrome, and the three together have my doctors testing me every 6 months for amyloidosis. I've had bradycardia for some time, though, and it's a constant with me. My BP drops from about 95/70 to 70/60 when I stand, with a HR of 60 to 125 or so.

Since your low BP is new to you, I'm make sure to talk to the doctor about it. I have heard several stories on the forum where people have BPs that go up and down a lot, too.

Best of luck!

Jana

That's great news! Keep updating us on how you're feeling. I hope it keeps working for you and that you keep having more 'fun' days.

Cheers,

Jana

Hi Pat,

Yes, I'm in the same boat that you are. I've been in and out of CHF due to cardiomyopathy and I've recently added diastolic dysfunction to the mix. It's so difficult because with POTS you're supposed to consume so much salt, but with the heart issues salt is a no-no. I also have OI so I can't take any meds that would bring my blood pressure down, and I'm a fainter. I couldn't tolerate Florinef or Midodrine, so right now I'm not on any meds, but have a pacer for my bradycardia. Have you ever had carpal tunnel syndrome?

I'm going to Mayo Scottsdale in about two weeks to see if we can figure something else out. Have you been to a specialist yet? Do you have low or high BP, or both? I know how frustrating this is! I was diagnosed with cardiomyopathy about 2 1/2 years ago (at Mayo) and with POTS about 10 months later. I'll certainly let you know what I find out when I get back from Scottsdale.

My best,

Jana

Hi Erica,

I get these symptoms, too. I've been really short of breath lately, and I'm sure it's related to my low BP, which has been worse than usual lately. Today, just being up for 10 minutes, I had 68/54 and 128. Needless to say, I felt horrible. How's your BP and HR? Hope you feel better soon!

Cheers,

Jana

Is there a place we can see the new design or has it not been made up yet? I would vote for something that's not as busy as what's on the current t-shirt. JMO. I'm ready to buy when they're ready! Bella, such wonderful ideas! Holiday cards would be great.

Cheers,

Jana

Have you tried something like an 'Ensure' drink? Doctors will recommend these drinks for people who can't get enough calories down because they have good nutrition and a decent amount of calories...

Hope you feel better soon,

Jana

Hi Jeff,

I would have to vote on no smoking of any kind. I just don't see where that can possibly be good for your body in any way. Do you have POTS? OI? If you've only tried it once, how sure are you that the benefits are actually due to the hookah?

Cheers,

Jana