potsgirl

Isn't there some spray out there that numbs the back of your throat? I forget the name of it, but you may be able to take it. Chloroseptic or something like that. It would be over the counter at your pharmacy. Tastes horrible, but is great at numbing.

I see both a cardiologist and a neurologist. I did go to Mayo last March to see a specialist in ANS who was a neuro, also. I know I should also see an endocrinologist (I think they'd be best for the autoimmune stuff, but I may be wrong), but just haven't gotten there yet. I would think you'd need the cardio and neuro, too. If depends on how familiar they are with POTS if you need other specialists. My cardio is very familiar with it, so I'm lucky in that respect. Oops - I forgot the gastro doc. Have you seen a specialist in ANS yet?

Take care,

Jana

Dani,

If you are leaking spinal fluid, you really should get it checked asap. After I had a spinal tap a couple of years ago, they didn't 'patch' the opening into my spinal column right, and I was leaking spinal fluid. It was the worst headache I'd ever experienced! I couldn't even raise my head from the bed without throwing up. Please get it checked soon, and let us know what you find out.

Take care,

Jana

I had a pacemaker implanted about 2 1/2 years ago due to some pretty severe bradycardia. I had also been diagnosed with dilated cardiomyopathy at the time. 6 months later, I was diagnosed with POTS/OI. Poohbear came up with one of the most important things to remember - have any MRIs that you might need done before you get your pacemaker! I wish I had known that before I got mine.

My pacer is set so that my HR doesn't go below 60 bpm, and I know it's helped in pacing my heart. It's in use about 40% of the time. They can get all kinds of feedback from 'reading' your pacer, from abnormal rhythms to atrial fib, etc. So at least I don't have to deal with my HR being in the 30s, and it does give me a feeling of relief that I'm at least protected from that problem. Also - I had to take Coreg and Coumadin, but that was for atrial fib and my cardiomyopathy...you still may need to take some meds.

Good luck! PM me if you want more info.

Jana

Hi Amy,

I have both severe migraines and interstitial cystitis, neither of which I had before my diagnosis, also in 2007, of POTS/OI. As Melissa wrote so well, I do believe that they are part of my symptoms from this illness, part of the autoimmune factor.

Good to see you, and hope you get all the answers you're looking for...then you can share with us!

Cheers,

Jana

Congrats!!! You've given my hope that perhaps I can make it to Europe next summer after all! Great news and thanks for sharing.

Cheers,

Jana

It's ragweed season here, too, and I feel doubly awful since it hit. Have you tried Benadryl or a non-drowsy allergy formula yet? You might need antibiotics if you have a sinus infection, however. Allergies can definitely make you feel worse, and if yours are bad enough, you may want to ask your PCP about Zyrtec or another prescription med if the OTC ones don't work.

Hope you're feeling better soon - stay in the AC

Cheers,

Jana

Hi Emily,

If I stick with a very moderate level of exercise (time and intensity), I'm usually okay, but when I overdo it, I'll feel horrible afterwards, kind of like you described but not as bad. I'm also like Alicia, where if I try to do too much, or do anything with weights, that I'll feel worse the next day...I know that there are several people on the Forum that can't exercise at all without getting quite ill. And I believe many of us have suffered the 'concrete legs and arms' syndrome, too. You're in good company!

Cheers,

Jana

Hello my Friends~

I've been struggling recently with a change in my sleep patterns. Since I became ill, I've never been able to stay up late - maybe 8:00 or so. In the last couple of months, especially since I've developed a chronic pain condition and have added one Percocet (5 mg) dailly, I get incredibly sleepy around the time the medication wears off, which is about 6 pm. I know the chronic pain is also taking a toll on my energy, but I've been heading upstairs to bed between 4 - 6 at night! I read for an hour and I'm out. Of course, this means I'm waking up at 4 am or so, totally out-of-sync with everyone else. I know I should probably try to force myself to stay up later, but bam! It's like I hit a wall and then I start to feel really sick if I don't go lie down and sleep.

Anybody else? Ideas? HELP!!

Jana

Wow...What an ordeal to go through! Thankfully you made it through everything, and now it's just waiting to get the results. I'd always rather know than not know. Good job!

Cheers,

Jana

Stacie,

Would it help change your insurance company's decision if your doctor would write a note describing how important it is for your health to take the test? I had good results with this one time when I was in a similar situation. Make sure it gets to the head of the company, otherwise you'll have to deal with reps who have been taught rote answers for everything. At least get it to a supervisor - and you write one, too. It's very important to send something in writing, directly to this person, and keep copies of everything for yourself.

Here's wishing you the best of luck! My insurance company ended up paying almost all of my Mayo costs, so I know it can be done! Let us know how it's going...

Jana

Hi Dani,

I had a period in my life where I got hit by several major stressors all around the same time. I had been dealing with some generalized anxiety (GAD) and OCD issues before that, but during that time they became more than I could handle. I started to see a psychiatrist/counselor and began to take Paxil and Trazodone because I was getting little to no sleep. That was about 10 years ago. I did not develop POTS/OI until approximately 3 years ago. It is my belief that there is a tie-in between anxiety and possibly OCD with POTS. I'm not saying anxiety causes POTS, I just believe that there are many of us have seem to have both. Are you taking any meds for this? Like Earth Mother said, having a psychiatrist behind you will cut out most of the times that docs want to blame everything on your 'mental health'.

Good luck and peace,

Jana

Pat,

Does it feel like you might be having angina?

I noticed that you're also an "allergy lady" like me. I also have kidneys take go back and forth in functionality, so I also can't take many medications for pain, like Aleve. Lastly, I've been through two sets of allergy shots (5 years first time, 3 the second), but had to discontinue them finally because I could never up my dosage due to the nasty side effects. I would wait for 1/2 an hour after the shot, go home, and then couldn't breathe. I also deal with inflammation in my fingers, especially.

I think it's great that some of us can maintain vigorous workouts, and I do believe they can really help. I've had to do more moderate exercise, like walking the treadmill or perhaps doing an elliptical trainer - that way I have handles I can hold on to when I get dizzy/off balance, and it's gentler on my system. Can't do much weight work...some light bicep/triceps and squats at home, but I really think that doing something, whatever you can manage, can help you feel better.

Good luck and let us know how you're doing! I actually find Pilates rather difficult, but like the stretching aspect of it.

Jana

You're a brave, brave woman. I would fight for my carbs...grr. A friend of mine is gluten-free, and she thinks it helps with her POTS. Let us know how it goes!

Best of luck,

Jana

Of course I'm no doctor, but I'm pretty sure that hives are usually indicative of an allergic reaction of some sort. Have you tried a Benadryl? Hope it cools down for you soon!

I think a factor to consider here would also be age. You don't say how old you are, but sometimes women will change their minds about having a child as they grow older. It sounds like the IUD would be a good option for you if you're still not positive. Sometimes docs won't perform the surgery if you're too young. Not saying that's right, but that it does happen. Depending on your insurance, I'm not sure it would cover the sterilization procedure, either. Whatever you decide, good luck!

Jana

I applied for a research study at Vanderbilt last year, and you do have to have your doctor's referral for them to process your application. I heard back pretty quickly that I did not meet all of the criteria they needed. Perhaps you should reapply if they're still doing the study? I know they're currently doing several with dysautonomia patients, including a sleep study.

Good luck,

Jana

The standard BP is usually thought to be 120/80, with a 40 point gap between your systolic and diastolic numbers. It looks like you may have orthostatic hypotension and POTS...try taking your numbers lying down and then after 1, 3, and 5 minutes standing. OI people will usually see a decrease in their systolic/diastolic when they stand, while it's indicative of POTS for your pulse to jump at least 30 points on standing (but the BP numbers don't drop too much). Your BP numbers are quite far apart, and I'm not the medical person to tell you why. But with mine (I know I have POTS/OI), I get a narrowing range when I stand (and sometimes sitting/lying) like 76/65.

Best of luck,

Jana

I was also the bigger bread-winner of the two of us - but I simply couldn't work anymore. It can really take a toll financially, but your health must come first. Are there other avenues for you to get income? Have you applied for disability? Please update us as to your status and how you're doing....

How interesting. I could never get any sleep aid from Ambien, Rozerem, or Lunesta either. Once in a while, if I feel like I really need an afternoon nap, I'll take a Benadryl, but I always regret it. It makes me sooo drowsy for the first couple of hours, and then I get kind of 'anxious' as it wears off. I wonder if my Klonopin is making my sleeping situation better or worse. I take .25 mg of it at night currently, but have been trying to wean myself off. It's incredibly difficult, even with that small amount! Anyone else trying to get off Konopin or Xanax?

Bella,

I have been unable to tolerate Florinef so far, even at a 1/4 of a .1 pill, so I can't relate to the drug's side effects. I just wanted to encourage you to hang in there, and hopefully they'll figure everything out and get you on the right meds. Please let us know what the cardio says today, and the outcome of this situation. You are always so loving and kind to others, you're in my thoughts, and you deserve a break!

Cheers,

Jana

Hi Kari,

I went to the Mayo Clinic also (Rochester) and my ANS specialist told me the same thing. We have a king bed, too, and it was difficult to tilt it 4" because you have to prop up the center of the bed, too. It's been 6 months, and I don't think I've seen any difference at all. My BP tends to run pretty low, though, and I think the elevated bed is more for those with higher BPs. I do sleep with one of those memory foam pillows though, with a thin pillow underneath. That combo seems to work the best for me.

Good luck!

Jana

Sorry, I forgot to put down the time of day that I take my Paxil and Klonopin - I take both a couple of hours before I'm going to bed because they help make me drowsy and I sleep a little better.

The form that you have to sign to get a regular flu shot is just to acknowledge that you are not allergic to eggs or ....one other thing - sorry, brain fog. I get the regular flu shot every year, and have had no trouble with it. My boyfriend teaches at a high school, and they have the shots free for the teachers - he always gets that. I'm unsure yet about the new vaccines, I guess there are two shots required for the new strain. I think I'll go with what my PCP says, because I really trust her advice.