goldicedance

That's great! Don't push yourself!

Thanks for letting us know.

Lois

The study might have been more interesting if they measured fluid output the night before the study started. I know many of us have trouble retaining fluids at night--i.e., loads of trips to the bathroom.

What do you all think:

Thanks for sharing the link!

Lois

For all my fellow Pacer People, do any of you have a Biotronix (spelling?) pacer that can adjust for changes in heart rate. I understand that this pacer has had some success in people with problems caused by BP drops.

Lois

Sorry about my late wishes. Hope you are recovering nicely. Good luck with your pacer! Let us know how it goes!

Lois

autonomia....autism

Both start with an A.

Horseback riding for POTS???

Horseback riding for autism, I can see.

Maybe the child has both, though POTS is certainly not a form of autism.

Lois

I am not sure what a canker sore is exactly. When I mentioned to my cousin the dentist, that I get these sores sometimes on the sides of my tongue--he mentioned the posibility of treating them with a laser.

Just a thought!

Lois

Hello, Ernie:

I assume that your doc is prescribing this medication to prevent migraines (rather than a medicine to take when you get a migraine). I haven't taken this particular drug.

I used to take Neurontin (3600 mg/day) to help prevent migraines. Neurontin also seemed to help with the other POTS systems. Last year, I changed to Lyrica. My Washington DC neurologist and Dr. Grubb both thought Lyrica was a "cleaner" drug. I take 150 mg of Lyrica in am and in pm. I also take Zoloft to help with POTS/Migraines.

My migraines (knock on wood) are controlled so well these days. Perhaps 1-2 headaches a month that respond to 1 dose of Maxalt. Before I had migraines frequently throughout the month. Some landed me in hospital for several days.

Let us know how you are doing.

Lois

Positive, pleasant and hopeful thoughts are going your way!

Lois

I have asthma = take symbicort with rescue inhaler. I also take Mestinon slow release.

Asthma testing - nothing to it. Either in a glass booth (generally in a hospital setting) or in your doctor's office exam room, they put a clamp on your nose and you exhale as forcefully as possible. Then after giving you a broncodilator, they do it again. That's the test in a nutshel. Sometimes the doctor will be blood gas study to see how much oxygen is in your blood.

Don't worry about it! It's a "nuthingburger" to me.

Good luck,

Lois

Morgan, I sure your Jake gets the help he needs and deserves.

Keep us posted.

Lois

Oh, Michele,

You are really undergoing alot of stress and tests.

Before I would undergo that interventional procedure, I might consult again with the doctor who wanted you to try a calcium channel blocker. If I understand correctly, you would be undergoing this trial in a hospital setting.

When I first came down with excessive tachycardia, the cardiologist tried verapamil (another calcium channel blocker).

BTW, how would your doctor treat you if you were indeed having spasms? Couldn't you try that?

Continued good luck going down these paths.

Lois

Bravo, Maxine....I'm glad that nasty tooth is out!

Lois

Gollyl Maxine....I am hoping that your long awaited extraction will go smoothly. Ill be thinking of you!

Lois

Hi!

I have asthma and have been taking mestinon since October 2004. I started with 60 mg and worked my way up, with the max being 60 mg 3 times a day. The only side effect I have is GI. Mestinon makes things run through my system very quickly - if you get my drift.

Mestinon seems to maintain my blood pressure and control my HR better.

Right now I am on Mestinon 180 TS - 1 at night. That seems to work the best for me.

The dose your doctor seems to want you to try seems really high. It seems to be twice what I am taking!

My pulmonologist actually was the one that started me on it based upon her conversations with Dr. Lowe.

The only way you know you can/can't tolerate it is to try it. BTW, what does the doctor who treats your asthma have to say? That is who you should be consulting with before starting this drug.

Most betablockers seem to be contraindicated for persons with asthma. I take Labetalol and seem to be working ok.

Good luck!

Loie

what feedback do you get from your CPAP machine? I get nothing. Let me know, please.

Lois

Morgan and Cardiactec,

I was in the same position as Morgan with the sinus node ablation then followed by bouts of bradycardia. That is when I got a pacer. Then for several years I was terribly bothered by Junctional tachycardia and eventually had an AV node ablation. Now I am fully paced. I am doing much better without the junctional tachycardia. I am paced at about 85 to keep my heart from having the hr accelerations and drops that cause me to feel terrible.

I would follow through with your hospital fight. However, that is your decision alone to make. What are your state's laws with regard to right to work and ADA.

Lois

Mestinon is not a new drug. It has been used to treat MG for quite some time. Only in the past few years (based upon Mayo Clinic research) has it been shown to be helpful in treating POTS.

Is dehydration a common side effect or could it just be coincidental?

I have been taking Mestinon since 2004. I switched to Mestinon TS taken at bedtime to help deal with the GI pass through rapidly effect along with cramps. That does seem to help and gives me better more even coverage.

Lois

Michele,

How awful! I don't really think I or others here are in a position to tell you whether you should go to the ER or not. I think that is a question only you can answer based upon your doctor's input.

Did the ER doctors contact your regular cardiologist?

Did your cardiologist, now that you've had a clean cath, give you any guidelines?

Just some thoughts.

Lois

Oh, Ernie...

I feel so saddened to hear about the result of your niece's test. However, as others have said, it is better to know what you all are dealing with so that you can be aware of your body when it begins to crash.

Please know that I think about you even though I don't often post!

Lois

I am sorry you have to go through all of this.

I think, though, you have a very astute GI doctor.

In June, I had an endoscopy and colonscopy. I stayed in the hospital the night before so that I could get IV fluids during the prep. An anesthesiologist with an assistant interviewed me extensively before the procedure and they administered the anesthesia. It wasn't twilight sleep; it was a general anesthetic that wore off quickly. I wish I remembered the name of it. I went home that afternoon and even went to the store on the way home.

Be thankful you have a doctor who takes things seriously!

Good luck!

Lois

I have been taking Zoloft for about 8 years. I started with a smal dose, and then very slowly worked up to 250 mg. I take it in the morning. Zoloft helps with the POTS, especially migraine headaches.

Dr. Low told me that 250 mg is the dose actually needed by most people when taking Zoloft for POTS. My intern had been worried about the massive amount.

I hope that this is helpful.

Lois

Well, after a long series of tests, including Endoscopy/Colonoscopy, CAT Scan with enterography, and 48 hour stool collection, the results are in.

It is the dyaautonomia that is causing my GI problems. The stool collection showed that I had diarhhea (no kidding, Sherlock). It also showed that I had some malabsorption (probably causing my vitamin D and B1 deficiencies).

So now I am taking one percocet before bedtime. That way, my back feels better so I sleep better. And since opiods cause constipation, it should hold my system in check.

Do any of my colleagues here also experience my GI problems.

Lois

BTW, I started Mestinon after my hospitalization for diarhhea. So while that drug may exacerbate the problem somewhat, it is not the sole culprit.

When you say "junp out of your skin," do you refer to chills, goose bumps and head tingling? I experienced that while on Midodrine. Midodrine is very fast acting and perhaps that intensifies the reaction.

I put up with it for several years because it made me functionable. Eventually I had a "relapse." Since then, I have been on Mestinon time release.

Have you tried Mestinon? Mestinon seemed more to stabilize my blood pressure so I could stand up.

Lois

I tried Coreg but did not have great results. Dr. Grubb recommended Labetalol, which I have been taking for about 2 year. I think I do better on that drug.

Lois

Michele,

I had tried to post a message about the thallium stress test but had problems logging in.

I wanted to alert you to the horrible way that you would feel while having the test. I thought I was going to die. The nurse practictioners kept talking to me and asking me questions so that I would "stay with them" during the test.

I, too, felt yukky after the test.

My test was normal. I hope you get good news from yours.

BTW, now that I think about it, I was sitting up during the test.

Lois