goldicedance

Good luck at Hopkins. It is a shame that I will be travelling down to Florida at the time you go to Hopkins. Otherwise, I would visit with you if you were so inclined for company.

My only caution is that your family who accompany you exercise caution while walking outside the campus. It can be a rough area although security is pretty good!

Hope that your condition can better be diagnosed and treated at Hopkins!

Lois

Oh, Flop...sorry to hear that you had a bad flop that landed you in hospital. Fingers crossed they can reposition your hip on Monday if not sooner.

Lois

Positive thoughts and hugs are on their way!

Lois

Hi, Lisa:

Check out: http://www.ssa.gov/pubs/10043.html#part3

This should help answer your question if not contact your local SSA office for the definitive answer.

Lois

Good luck, Ernie...Hope you get good news!

Lois

For those of you with genetic POTS (for lack of a better expression), have geneticists been able to identify the gene/gene mutation? Just curious.

Sorry about your experience. I am not quite sure what he meant when he said you would have to be followed very closely with mestinon. I was prescribed Mestinon by Mayo Clinic in Rochester. My doctor in Maryland followed me but no more closely than she would have with other meds. I don't think Mestinon is a dangerous drug in comparison to others. It, too, is pretty fast acting.

Did you say you wanted to give Mestinon a try? Mestinon is among the arsenal of drugs for POTS. I think you need to be firm and positive when you speak with your doctor. Sometimes I think the doc gets turned off if the patient is not willing to try different things.

The next time you go to doctor for treatment of POTS you might think about taking the section of the DINET page that lists the various drugs that have been used to treat POTS. There is no magic cocktail as you surely know. You really need to have a doctor willing to take the time to explore the various possibilities.

Lois

Re: Diabetes Insipidus

From what I understand, it is quite difficult to diagnose DI. I was told my a nephrologist after the water deprivation test that I definitely had DI. I went to the Endocrinologist that I had seen in the past. He thought my symptoms could be DI but he wasn't sure. (Can you imagine a doctor with the ability to admit he wasn't sure. )

He referred me to a doctor at Georgetown University Hospital--Dr. Joseph Verbalis, who specializes in:

Pituitary diseases

Disorders of water metabolism (DI, SIADH)

Adrenal disorders

He ruled out DI.

If you still are worried about DI and its cause and a trip to DC is possible, I would highly urge you to see Dr. Verbalis.

Lois

Ernie...

I am still thinking about your situation. It is amazing: Whenever I go for my gyn appointment, there is always a nurse in the room. I ha ve been told it is to prevent women from claiming a doctor's assault. Isn't it a pity that the same can not be said for a male nursing assistant bathing a female patient?

Be strong!

Lois

Oh, Ernie....My heart goes out to you. I read your post last evening and was and still am at a loss of words to cover such a horrific and terrifying experience. I echo the sentiments expressed by the others who went before me in responding to your heartfelt post.

I was so bothered by your experience that I spent some time looking on the internet. Apparently your experience is not an isolated one.

Does your city have a Special Victimes Unit? Based upon your post, you seem willing to go forward with actions against this demented individual. Is there an attorney willing to work with you?

Please know that you will be in my thoughts. You are to be commended for sharing your experience. Perhaps that will be the first step in your healing.

Lois

I do. After numerous tests including colonoscopy and endoscopy, stool cultures, gall bladder surgery, etc, the only explanaton I got was a problem with the autonomic nervous system. The only think that works to keep this nastiness at bay is a percocet at bedtime.

I, too, would like to know what others do!

Lois

I am on Labetalol and seem to do better than on other beta blockers. I have been on Labetalol for about 2 years.

I tried Coreg but Labetalol seems to be better. I can't remember why at this point.

Lois

Oh, Ernie....That is fantastic. Several years ago, I had a presc. for a hospital bed. I couldn't get an answer from my insurance whether I was eligible for a rent/purchase plan. We opted for adjustable beds. My problem is that I creep down from the incline when I sleep.

I hope that you get some improved rest with your new bed. Let us know how it goes!

Lois

Angela,

I wish I had the magic potion. I have had these circles all my life. One doctor said it was related to allergies.

If you find the answer/solution/magic to this problem, I would be overjoyed.

Lois

So sorry to hear that you are in the hospital. I hope that your stay will be short and that your recovery will progress.

Just curious:

When you all have gotten these readings, was the pressure taken using an electronic machine or was it taken the old fashion way using stethoscope.

With my pacer, I frequently get strange readings when they use the electronic machine as that is not all that sensitive to strange beats. Perhaps that is the same with BP.

Just a thought.

Lois

I take Mestinon 180 time release. I take it before bedtime at Dr. G.'s suggestion to help minimize stomach upset. I have found that it does help.

Is it possible to split the 180 time release into 2?

Frankly, I would give it a try.

Lois

Oh, my dear Morgan, my fellow pacer and ablation friend.

I was running into the same sort of problems. Eventually, we had my HR paced at 84 and that seemed to cut the variations. Around the same time, I was getting junctional tachycardia, which feels a whole lot worse than sinus tachycardia. After numerous times with fiddling with the pacer, I had the AV node ablation. I can say I feel a whole lot better than I did before the AV node ablation.

Good luck! Docs, nurses, and techs have never experienced what we feel. Hence, they have no way of really knowing what it felt like to walk (well, sit) in our shoes.

Lois

Oh, Angela, you have been through the wringer. I sure hope that you will be feeling better each day.

Lois

PS I have the same problem with IV's. Sometimes they have had to use pediatric size catheters.

I feel sorry for you and the situation you find yourself in.

You might be interested to read this website:

http://www.fda.gov/fdac/features/2006/206_fentanyl.html

You should be very careful about using these patches as others have stated. The FDA warns against using the patch with heating pads, etc. The FDA further warns against cutting the patch, shielding the patch, etc. as you can not be sure about the amount of medication you will be receiving.

Finally, no one, I don't think here, has mentioned the fact that there should be concern from Department of Health and the manufacturer about dispensing one for daily use given the possibility of overdose and addiction as well as street sales of this drug. It seems to me that they have no way of ensuring that you will actually dispose of the "spent" patch after 1 day.

There have been a number of cases of accidental and intentional overdose/death from inproper use of the patch. Just last week, I saw a TV show - Dr. G, Medical Examiner. In that episode she had to determine if the person's death was from an overdose of the drug or a defective patch. Apparently there have been cases where the patches are defective and release more of the drug than should be due to leakage, etc.

Sorry for the rambling. I just caution about the problems with the patch. We care about you and don't want you to experience any adverse reactions to the patch!

Lois

Morgan, dear...my cardio said the ablation caused the need for the pacer, too...the ablation caused bradycardia as well as junctional tachycardia.

Oh, my!

I got a pacer back in 1996, right after a sinus node ablation that caused bradycardia. Right after the ablation, I began seeing an EP who really was chagrined that I had gotten that ablation.

I understand there is a new pacer put out by Biotronics that can compensate for drops in blood pressure. That pacer also has an upper paced limit of about 160, rather than the current 120.

I probably will get this new pacer in the not-too-distant future when I decide where to have it done - Ohio, Florida, or Maryland.

Morgan, dear, would this type of pacer be useful to/for you?

Lois

I get the flu shot!

Lois

Yes, it works for that according to my pulmonologist. Good luck!

Lois

Thanks, T-Rose, for your support and suggestion. This pacer is fairly new. Dr. Grubb said he has had success in using this pacer given the bp adjustments to hr and the fact that the hr can go up to 160 whereas the one I have can only go to 120. Since I am paced at 85, there is not much room for acceleration.

I had a port placement for chemo. I had 2 incisions. They were slightly painful but not awful. They were less painful though as compared to my pacer insertion (lst time). With the pacer they had to insert 2 leads - 1 to the atrial, 1 to ventricular. They had to make a deep pouch to hold the pacer. The pouch had to be fit exactly so there was little to no movement of the pacer/leads.

I would check with your doctor. I don't think anyone else here can be a real substitute for your doctor's advice.

Lois