goldicedance

Just wanted to chime in with my Thanksgiving wishes today to all of you! I don't think I could express my thanks better than all of my friends before me.

Let us give thanks for what we have, what we can still do, the love and support of our family and friends, and thanks for all the caring we all have received from potsplace.

Emily--I never heard of a brisket cooking so long...what gives?

Gobble, gobble, gobble!

Good luck, Hayley. Will hold you in my prayers next week.

I do have a suggestion, particularly if you are in a telemetry unit where they monitor your heart rate 24/7--try to walk around so that they can capture your heart rate. That was advice that I got from my cardiologist when I was hospitalized.

Don't forget to ask for SALT!

I would like to add that the Mayo doctors are superb for diagnosis. However, once you are on their "rolls," they seem to respond quickly to your doctors' telephone calls to them. I think that your PCP is the best intermediary between the Mayo and you.

Emily, One of the country's leading experts on diabetes insipidus is at Georgetown University should you ever decide to follow it up. Do you use the spray or the pill? The Georgetown specialist told me that the spray was much more effective--hard to believe that something that you spray in your nose can stop you from going to the bathroom. It does last longer than the pill.

Lois

Hi, Beverly...I will hold you, Nicole, and your husband in my thoughts and hope that her being home with you will help perk her up in more ways than one. Last month, when I was really in the bottom of the POT hole, my doctor was in touch with the Mayo. I would have transferred from Maryland right into the Mayo hospital. But, since Dr. Low and others were going to be away, there was not much point. I will be going there in the next month. I have seen Dr. Low a few times.

I hope that Nicole is not spending all her time lying in bed even though I know that's when she feels the most comfortable. While paradoxically you feel better all snug as a bug in the beg, you are actually doing your body more harm. It is easy for me to say now because a few weeks ago I stayed in bed in the hospital for several days because I felt so bad due to the gall bladder problem. Each of the specialists who saw me remarked that it was important to get out of bed--sit in a lounge chair with feet propped up--in order to maintain some conditioning. They stressed that any one--even someone in good health--would have POTS like symptoms when they got up--drop in blood pressure and increased heart rate.

When I first started with POTS problems back in 1993, I was first put on a beta blocker which did not help all that much. The next step was clonidine. No luck. Eventually my doc located a cardiologist who, because he had studied at Vanderbilt, was really interested and knowledgeable about POTS. I was even in the clinical trials for midodrine. During the past several years, POTS has reared its ugly head several times--generally landing me in a hospital to get fluids, medication switches, stop migraines. One time I even tried phenobarbitol.

Right now, I am having good luck with Mestinon, DDAVP, neurontin, and zoloft. How long that will last remains unknown. Sometimes I feel like I am being held together with bandaids.

You never have mentioned what meds Nicole has actually tried. Has she tried Midodrine? Neurontin? SSRI? Clonidine? Mestinon? Octreotide?

Where (i.e, state) do you live in? I traveled to WV to seek the help with Octreotide and like I mentioned before have been to Mayo twice. The first time my cardiologist (who apparently knew Dr. Low from autonomic society meetings) wrote a very detailed referral letter. The second time (my cardiologist had already given up patient care) following a terrible POTS spell I called the Mayo myself--it took about 2-3 months to get an appointment.

Who are you calling at the Mayo? There are several doctors there with an expertise in POTS. As someone else mentioned--Vanderbilt is also a hotbed of knowledge.

I feel so bad for Nicole. She is too young to feel this poorly.

Pass on our good vibes to her.

Lois

Hi...I am one of the people with POTS and dilute urine. I take DDAVP .1 spray once in the morning and once in the evening. My nephrologist did a water deprivation test and said that I had diabetes insipidus. However, at the Mayo Clinic they redid the test and said I didn't have it.

The problem with dilute urine surfaces whenever my POTS is really bad.

Dr. Low at the Mayo told my internist just a few weeks ago when I was hospitalized with dilute urine problems and dehyration that I should go back on DDAVP.

I do not have other chemical sensitivities. I am not sensitive to medications.

Please email me if you want to "chat" more about this.

Lois

Actually, fellow TTTers, I had saline during my first TTT. It was given at the end of the test and following the administration, another TTT was given to see whether and how my system responded to the addition of fluids to bulk up the volume.

Sue,

Welcome back! So sorry to hear about your accident. My daughter a number of years ago slipped on the ice at school (ironic since she is a competitive ice skater) and got the bump and fluid on her knee. Her ortho suggested wearing a brace and seeing what happens. In about a month, all the fluid had retreated and she hasn't had a problem since.

Re: Your question about surgery

Unfortunately I have had several instances where I had general anesthesia--lung surgery, cardiac ablation, gall bladder surger. Each time, the anesthesiologist knew and took extra precauctions. For example, when I had the lung surgery, I had an internal blood pressure monitor. Most recently, during gall bladder surgery, the anesthesiologist closely monitored me.

My big suggestion is that you be sure an anthesiologist is with you the whole time as opposed to a nurse anthesist.

Hopefully, your knee problem will resolve itself and surgery will be unnecessary.

Feel better,

Lois

Leah, Hope you are feeling better from your food poisoning. Be careful not to get too dehydrated as that will set you back and we don't want that to happen.

I am still shocked from reading your story about your non-ADA compliant boss. In fact, I was so angered that I didn't know what to say. My mouth is still wide open from the shock and awe. She certainly did violate the intent, spirit and purpose of ADA.

I guess I would listen to your brother the lawyer as he probably knows better than I.

Keep up your studies and persevere! You will be successful and should not have to depend on anyone for your livelihood. Keep up your fighting spirit! Don't let those insensitive remarks make you feel inferior. You are NOT!!!!

All the best,

Lois

Jan, I do hope that you continue to do well on the new regime. Don't worry about your weight! It's how you feel that is most important to you and to us. We'll keep out POTS fingers crossed for you.

Continue to feel better!

Lois

Weight loss, for sure, when POTS rears its ugly head. When I was first taken with POTS, I had weight losses. Now, whenever POTS gets exaccerbated, there is weight loss--caused primarily by fluid imbalances--i.e., more out, than in. That's the reason for DDAVP.

Emily, From your mouth into G-d's hear!

You're explanation of DDAVP was right on target. I have taken it in the past and am on it now. I too was tested for diabetes insipidus. That was negative. Although Dr. Low said that it it looks like a duck and quacks like a duck, the treat it like a duck--hence DDAVP. Do you use the spray?

Lois

DDAVP is short for desmopressin something or another. I take it to retain fluids. I have a terrible time retaiing fluids. Without it, at night I could get up 6-8 times to urinate. For me it helps prevent dehydration.

Goldie

So far it's now been 10 days since I added mestinon to my regimen. I still feel pretty good and am contemplating going back to work within the next week. The DDAVP has helped me stay better hydrated. The mestinon has helped me immensely remain upright. Other than perhaps a mild stomach upset now and then from the mestinon, I have had no side effects.

Yesterday, I went to my internist for my hospital follow-up--she thought I looked like a new person. It kinds feels like being reborn again--being able to walk, stand, etc. I should point out that sometimes after waiting in a line or something like that I can feel my heart beating faster so I know to sit down.

I go to the Mayo Clinic in December for another evaluation.

My internist again reminded me that it is so important not to stay in bed or inactive. She said that if you put a healthy person in bed for more than a couple days that he/she would also develop POTS like symptoms. I have heard that caution before from the Mayo Clinic. I urge all of you to do the most you can to stay out of bed during the day. Even if it means staying in a lounge chair with your feet up.

I think I am going to try water therapy as I way of strengthening my muscles. Water with its anti-gravitational effects is supposed to be wonderful for POTS.

I would also encourage you to ask your doctors about letting you have a try with mestinon. If it doesn't work, then you can stop. But you won't know if you don't try.

Through my 10 years with POTS, I have done lots of trying with various combinations of drugs and, of course, salt additions. I refuse to stop trying and my husband is the most supportive person I know. Over the years I have had numerous hospitalizations (some for as long as 2 weeks--wow that freaks the insurance companies out) when POTS has reared its ugly head.

Good luck to all and I will keep you all posted.

Hi, Stacey...Sorry I am late with this most. I am glad now that you are little cheered up. Anniversaries can be sorrowful things. Thank goodness, they pass although we still feel those twinges throughout the year.

I am going on my 11th anniversary. I keep fighting on with POTS and never giving up. I have had good days/months and bad ones. Right now I am going from bad to good with mestinon. I have my fingers crossed that it will last.

Your husband is certainly a keeper. It must be very difficult for him to see the love of his life suffering so. You are indeed blessed with a wonderful husband.

Keep the faith!

Lois

Herdswoman,

You are too much. Your ablation and pacer experiences are worse than mine. You sure had an overzealous ep doctor.

Actually, I was up the whole time the pacemakers were put in. I can to this day remember the sounds of the stapler stapling the incision close. I was not feeling all that much better after the lst pacemaker insertion. Turns out, the lead was loose. That had to be fixed. Made the docs promise I wouldn't hear the staples again. Then last fall after 7 years it was time for a new pacemaker.

My pacemaker is on the right hand side. I would have preferred the left since I am right handed.

You are a real character! I enjoy so much your posts. They are funny, too the point, and true.

What year did you have the ablation?

Herdswoman, I can top that--I also had an AV node ablation. Let's put it this way--the sinus node ablation was a terrible mistake but that was before much was understood about POTS. The sinus node ablation left me with tachycardia as well as bradycardia. After a couple years, I decided to go for the AV node ablatoin because I was getting terrible junctional tachycardia.

How did you come to get an accidental AV node ablation?

You're right about my pioneering. If only I didn't have the sinus node ablation. But, hey, that's water under the bridge.

I have tried numerous medications and in varying combinations. Some really did me in like phenobarbital and flourinef. Clonidine was not so great either.

I myself have a St. jude's pacemaker with all the functionalities. So far I am on my second pacemaker. The first lasted 7 years!

I try to carry on my daily activities. Right now I have been off work since September 20 following two weeks in hospital for gall bladder problems. That caused a set back of POTS to the extent that I was hospitalized a few weeks later.

Right now, I am feeling pretty good. Kinda concerned because of weight gain triggered by DDAVP. Life will go on even if my clothes get too small!

Have a wonderful weekend everyone!

Hi, Emily. I do not like DDAVP because it seems so unnatural. I use 1 squirt in the morning and one in the evening.

I have been sick since December 1993, but was diagnosed in 1996. At that time there was virtually very little written about POTS. It was only through the diligence of my PCP that she was able to find a 1995 article by Dr. Low and then find a doc in my area who was an expert on POTS. I was in the cliical trials for midodrine.

Thanks everyone for your wishes.

Lois

With mestinon, so far I can stand up without getting bigeminy, without my blood pressure falling, and with a milder rise in my heartrate than in the past. I am a bad one to judge heart rate increases since I had a sinus node ablation many years ago.

I was pretty debilitated before I went in the hospital. I had been hospitalized for 14 days due to gall bladder problems and surgery. Home recuperating, I was not too active and began to feel worse and worse each day. Finally, I couldn't take it anymore. My doctor was concerned with the bigeminy, dehydration and inability to stand. I also had severe chills and sweats but no infection.

My doctor had been admitted via the emergency room. She contacted the Mayo Clinic (I have been there a couple times) and discussed my situation with Dr. Low et al. They advised mestinon (30 mg twice a day increasing to 30 mg three times a day) plus DDAVP.

I had been on DDAVP in the past. I am not a fan of DDAVP but I will do what it takes. I cannot absolutely take florinef as I get a never ending migraine headaches requiring hospitalization.

I have my fingers crossed that I will continue to get relief from Mestinon.

Thanks for all your well wishes.

Corina,

Have a lot of fun and well-needed and deserved weekend without kids. Where are you going?

Rest up, think good thoughts, and have a wonderful relaxing weekend!

Lois

Rita..I also take neurontin and zoloft and DDAVP.

Michelle--A month's supply (90 - .6 tablets) of the generic is about $35.00.

All-I've been taking Mestinon since Saturday--for 6 days. So far, so good. I hope it continues. I feel like a new person!

Here is the article about Mestinon's use to help up maintain blood pressure while standing but not while lying down.

Mayo Clinic in Rochester

Tuesday, October 05, 2004

Mayo Clinic Finds Effective Remedy for Blood Pressure Drop When Standing Up

Additional Resources

For appointments or more information, call the Central Appointment Office at 507-284-2111.

Other Web Resource: Becoming a Patient

Journalists:

For more information, contact:

Lisa Lucier

507-284-5005 (days)

507-284-2511 (evenings)

newsbureau@mayo.edu

ROCHESTER, Minn. -- Mayo Clinic neurologists have discovered a drug application smart enough to alleviate orthostatic hypotension -- problems with sinking blood pressure when standing up from a sitting position -- without the unwanted effect of also causing patients? blood pressure to soar when lying down.

?This is a significant step forward for these patients,? says Phillip Low, M.D., Mayo Clinic neurologist and lead study investigator. ?This would be a good drug to provide the first line of treatment.?

The drug, pyridostigmine, has been used for years for myasthenia gravis, a neuromuscular transmission disorder. Dr. Low hypothesized that it would also improve nerve cell transmission for orthostatic hypotension patients and trigger the reflex that controls blood pressure in all positions.

Of the 58 patients in Dr. Low?s study, one-third were able to stop taking any other orthostatic hypotension medications, and others were able to lower the amount of other drugs needed. Orthostatic hypotension is especially common in those over age 70. In general, blood pressure control lessens as one ages, according to Dr. Low. Common causes of orthostatic hypotension include diabetes, autonomic neuropathy, multiple system atrophy, pure autonomic failure and Parkinson?s disease. Certain drugs, such as diuretics and medication used to control blood pressure, are also common catalysts for the condition. Studies conducted at Mayo Clinic by Peter Dyck, M.D., neurologist, indicate 10 percent of diabetics have orthostatic hypotension.

The challenge with trying to fix this condition, according to Dr. Low, is that most medications that increase blood pressure raise blood pressure in all positions. Thus, the drugs would work for patients with orthostatic hypotension when they stood up, but their blood pressure would be too high when lying down, increasing their risk of stroke. Dr. Low felt that this price was too high, and that treating with medications that raised blood pressure while standing but raised blood pressure while lying down amounted to trading one problem for another.

?We wanted a ?smart drug? that would only increase blood pressure when standing up, and not when lying down,? says Dr. Low. Pyridostigmine works at the level of the autonomic ganglion, which has minimal nerve signaling traffic when lying down. When standing up, however, nerve signaling traffic in the autonomic ganglion increases, so the researchers theorized that a drug that affected the autonomic ganglion would improve orthostatic hypotension patients? standing blood pressure but not increase the blood pressure while lying down.

After a small, open trial of 15 subjects in which the pyridostigmine performed effectively as hoped, the investigators proceeded to the current double-blinded study of 58 patients. The patients either received placebo, pyridostigmine alone or pyridostigmine in combination with one of two low dosages of midodrine, a drug previously proven to improve orthostatic hypotension.

The effects of the drugs were measured one hour post-treatment. Pyridostigmine significantly improved the patients? standing blood pressure without elevating blood pressure while lying down. The positive effects of the drug were even further improved when combined with low-dose midodrine. Improvement of blood pressure was associated with improvement of symptoms while standing.

Side effects from pyridostigmine were minor and transient, including some abdominal cramping or need to go to the bathroom more often than usual.

Paola Sandroni, M.D., another Mayo Clinic neurologist, conducted a follow-up study of the first 45 patients in the study led by Dr. Low; the follow-up study occurred an average of 19.5 months after the first trial. Detailed information was available on 32 patients, and 75 percent reported either good or excellent results from the pyridostigmine treatment. Approximately one in four were able to manage on pyridostigmine alone, and one in three needed other medications, yet were able to reduce the dose of the other medication (e.g., midodrine or fludrocortisone).

?By the time they come to see us at Mayo Clinic, the majority of our orthostatic hypotension patients have had multiple treatments and have not done very well,? says Dr. Low. ?They are very grateful to have found this drug [pryridostigmine].?

The next step in the orthostatic hypotension research will involve seeking out an even smarter drug combination involving pyridostigmine that might work on multiple levels.

A Program Project Grant for research in autonomic disorders, which was first awarded to Dr. Low by the National Institutes of Health in 1996, funded this study.

Hi, friends...Just want to let you know that I have tried Mestinon. I was put on Mestinon in the hospital because I was in such bad POTS state. I was also dehyrated.

The Mestinon is working like a champ. It is an inexpensive drug. So far, perhaps the only side effect I have had is an upset stomach--I can deal with that. I am also back on DDAVP to help retain fluids.

After 5 days in the hospital, it is oh so nice to be home. And, I missed hearing what's happening to all my friends here.

We'll keep Nicole in our prayers. Perhaps she needs to change beta blockers. There are a whole slew of those out there so if one doesn't work, there are others.

I was just discharged from the hospital after spending 5 days on IV fluids. Once you get dehydrated, your whole body is off. I did try a new medication recommended by Mayo - mestinon. So far it has worked miracles--it has gotten me on my feet again. I was really down when I went to the hospital on Friday.

Just curious - what medications has Nicole tried? Clonidine? Midodrine? Flurinef? Mestinon? Neurontin? Zoloft (or other anti-depressant in that class)? It takes a lot of time to get the right medication or the combination of medications. Sometimes they work, sometimes they don't, and sometimes they stop working.

I have had POTS since 1994 and believe me it has been a road filled with turns and dead ends.

Is Nicole seeing a POTS specialist? Have you considered asking her doctor for a referral to the Mayo Clinic? She is so young to be suffering like this.

Let us know how she is feeling.

Morgan, my prayers are with you and your husband. Go find a new set of docs and hospitals. His care was atrocious and you have a right to be angry.

Keep your spirits up - you got to be careful yourself!