goldicedance

Hi, Ellen...I don't have information on this particular study. It is possible, though, that I was part of this study. For several months, I was taking octreotide and sometimes in combination with midodrine. The octreotide really improved my symptoms until I developed gall bladder problems. I preferred octreotide because I didn't get the side effects (chills, itchy scalp, etc) that I got with midodrine. The downside of octreotide is is cost. If you are near Morgantown, WV, I would suggest making an appointment with Dr. Hoeldtke. He is really an expert on POTS, with his main interest being on the use of octreotide. Lois

Ami, So sorry to hear about your son's illness. I sure to hope they find a reason to explain his illness as well as a cure to aid in his recovery. Let's hope the days ahead bring good news! Lois

Dear Emily, My thanks for keeping us informed about Melissa. Please convey to her that she continues to be in my thoughts and that I pray for her continued strength in fighting. I think the question about immunogammaglobulin (spelling) came up because Melissa took some IVIG treatments. IVIG is a blood product that carries some risk of infections carried by the donors. You are a dear! Lois

Gayla...I am on my 3rd pacer....batteries worn out on two, and the third because I needed to get the pacer moved to my abdomen because of breast cancer radiation. They did not take out the leads. In fact, when they moved the pacer, they used what I call "extension cords" to extend the leads. Each pacer has been new technology. In fact, the third pacer was supposed to be a different brand and they could still use the old leads. Removing leads is a very difficult procedure--chance of fracturing the leads, tearing the heart muscle, etc. Don't worry about the leads.

Sorry to hear about your intractable headaches. Have you tried DHE IV? That is the ultimate for getting rid of a migraine. After many super migraines (hospitalizations for several days), I now have them under control. I am in the process of "weaning" from Neurontin to Lyrica; take Zoloft. Maxalt seems to work the best for me in terms of getting rid of a migraine. I had tried Imitrex, Zomig, etc. Are you sure you are not having rebound headaches? Has your neurologist mentioned the possibility of a occipital nerve pinch that can cause migraine-like headaches? This can be helped with a nerve root block. Good luck in your quest to be headache free... Lois

My neurologist was offering botox for migraines, but not for mine which she thought to be POTS-related.

Melissa, I pray for your strength to endure yet another infection and set back. Hugs to you in Toledo! Lois

I would be concerned if my doctor was not concerned when I called regarding increased chest pains. I am not sure how a doctor can be so cavalier about that without examining you, including EKG, etc. If my doctor didn't want to see me when I was experiencing increased chest pains, I would find another doctor. Think about that.... Lois

Corina, I see that computer mahjong is one of your favorite games. Was it hard to learn? Is it similar to the real game? I have a vintage mahjong game that belonged to my beloved mother who passed away some years ago. The tiles are ivory (before ivory became a no-no). I sure would like to learn how to play. Is there an internet version available in which we could play against each other? Lois

A question for you: Do you measure all your fluid intake and fluid output? That might give you an idea about the effect of the IV fluids are having especially given different amounts of time. Even during the periods of hospitalization, I was certainly getting more than 1 liter a day in IV fluids. In recent times, I was getting about 2 liters in 2 hours. It was quicker because of the medaport. Hope you get this sorted out sooner rather than later. Lois

I should recommend that you contact your doctor. I don't think any of us here are in a position to respond to your question about whether or not chest pain is benign. What is benign for one of us, may prove not to be the case with your pain. Lois

On the 12th day of Christmas, I finally saw Dr. Grubb and he said, "Yes, there is something wrong with thee!" Goldie

Thanks for the reference. My question still remains: For those of you with EDS, how was it diagnosed? Did you go through gene testing?

Another suggestion is to revisit the cardiologist and have him do the poor man's tilt table test. My docs don't like to do this because it takes too much "unbillable" time. Also, you might suggest that he treat you as if you had POTS and start you on some of the basic meds used to treat POTS - beta blockers; midodrine, etc. Only start one at a time so that you know what is helping. Also, try salt loading. Don't give up...you need to challenge your docs to think outside the box! Lois

I understand that many here have EDS Hypermobility Syndrome and some say that also have vascular involvement. Could you please tell us how specifically it was diagnosed? I thought that genetic testing was necessary to confirm the diagnosis. Now, I have been reading about diagnosis using the Beighton scale. Help! Lois

On my eight doctor visit, my kidney specialist told me 8 trips to bathroom at night did not mean something wrong with thee. On my ninth doctor visit, my cardiologist disconnected my halter monitor and told me everyone has skipped beats, there's nothing strange with thee.

Morgan, Dr. Grubb wanted me to try Labetalol. However, when I told my cardiologist, he suggested that I try Coreg first. He thought that Coreg was a more gentle drug. He recommended I start with Coreg and then go from there. Right now I am on a small dose of Coreg twice a day. I seem to be in the small group of POTS people who have hypertension. Hope you can contact your doctor before the long weekend. It would be ashame to have that on your mind. Lois PS: Strength to enjoy the Holidays!

First, welcome to this great group. You have a lot of friends here. Have you been tested for LYME disease. Many of the POTS-like symptoms are actually caused by LYME. Given that you live in Connecticut, I strongly urge you to get tested if you have not already done so. I gather that you are a Federal civil servant. I retired last year after 34 years of work. I finally retired because I was just worn out from POTS as well as GI problems. I got sick in 1994 and had numerous absences, including several weeks at a time. My manager was very tolerant. By 1998, I just could not commute to work, deal with the heating/cooling problems, and deal with the need to put my feet up or sometimes even recline. In 1998, I got approval for acccommodation of working at home. I worked at home 3 days a week and came into the office 2 days. I was given (loan) a government computer, giant printer, fax machine and two telephone lines. I felt very lucky. In spite of this accommodation, I was still on leave (sometimes LWOP) to go to doctors' appointments, to completely rest, etc. I am glad to see that you are now beginning medical treatment. You can see from the numerous posts that we are all on a variety of medications to help control our symptoms. Medications need to be titrated to fit a person's situation. You are taking Midodrine, I see. Your dosages are pretty low. Many of us take 10 mg of midodrine 3 times a day (when upright). I sometimes upped my morning dosage to 12.5. There are many other medications that can be added to your regimen--cocktails including beta blockers, mestinon, clonidine, fluorinef, SSRI's, Procrit, etc. Then there are some other things--V-8 juice which is loaded with salt--a good way to start the day; as well as compression stockings. You are the beginning stages of coping with POTS. Don't give up...there are still many avenues to explore to help you maintain an optimum level of functioning. Dr. Grubb--a real treasure--has written an article which may prove helpful to you, your doctors, and even your employer. To Print: Click your browser's PRINT button. NOTE: To view the article with Web enhancements, go to: http://www.medscape.com/viewarticle/522421 ________________________________________ The Postural Tachycardia Syndrome A Concise Guide to Diagnosis and Management Finally, if you would like a copy of my doctor's letter which served as the basis for accommodating my work at home schedule, please send me a message. Good luck. Have strength and courage!!! Don't be impatient (easy for me to say, but difficult to do in practice)--treatment regimens are constantly evolving--both on an individual and research basis. Lois

Good luck, Gayla. Here are some suggestions: Fluids, fluids, fluids Caution against outpatient surgery - fluids, fluids, fluids Consider getting your appendix out at the same time...I did...my doctor and surgeon agreed that with my condition, I should try to avoid surgery, thus thinking that if I had both out together that maybe appendix surgery in the future could be avoided. Besure your surgeon is skillful at doing it laporascopically, if that is possible. I did ok except for the c-difficile infection that I developed shortly thereafter. Lois

Leigh, You might want to read "When Bad Things Happen to Good People." It provides thoughtful insights about how to deal with some of the issues you expressed. Probably the most important is one along the lines that Nina and Corina pointed out. BTW, Corina, I liked the rucksack expression. I will pack that in mine and remember it indeed. Lois

Melissa, You are indeed a fighter. I pray for your strength and courage as you continue this battle. I wish I could be in Toledo to comfort you. Lois

Glad, my little Mouseketteer, that you had a good Neuro visit. I had been on massive doses of Neurontin (3,600 mg per day). I take it for POTS, including migraines. I recently had to change headache doctors since mine moved out of state. I am now trying Lyrica. She said that it is the sister drug of Neurontin but sometime you don't need as much of it. She said, if I understood it correctly, that after a period of time on Neurontin, the 3,600 mg of it was acting as if I were taking a much smaller amount. I conferred with Dr. Grubb's office and was told that Dr. Grubb is now recommending Lyrica. Good luck. Lois PS I used to call myself the Queen of Neurontin. I would get it delivered by the carton full from my mail order prescription service. I was taking the 300 mg capsules.

What a shame that you have had to deal with your illness so long. Propanol (a beta blocker) is often one of the first steps in trying to find a treatment for your symptoms. If your doctor recommends it, I would certainly try it. You need to be proactive and open to different treatments if you want to see some light at the end of the tunnel. Unfortunately it may take many attempts to find the right medication(s) at the right dose(s). You and your doctor might find the below referenced link (an article by Dr. Grubb) that describes various types of POTS and gives a very concise guide to different treatment modalities. http://www.medscape.com/viewarticle/522421 I know this is hard but you must be motivated in finding some relief for your debilitating symptoms. I am sure glad that you found our wonderful group. We are there for you! Feel better, Lois

You might want to soak your finger in a warm solution of water with a bar of Ivory soap before putting on the antibiotic. An epsom salt soak also might help. Good luck!

My little Sunfish: Hope that you can swim out of the hospital fish bowl soon and into calmer waters. This is no way to spend your birthday. I've had the "opportunity" to celebrate my birthday in the cardiac care unit....They wouldn't even provide a saltshaker for my birthday cake. All joking aside, I wish you were home, not in the hospital. I send you hugs and good wishes. Lois