goldicedance

When I saw the post about a quilt, something else came to mind:

Anyone for doing knitting squares (same dimension each square but you can vary the design). I would put them together and we can donate the quilt to perhaps the Children's Inn at the National Institutess of Health.

The Children's Inn seeks very small gifts or crafts that they can put in each child's cubby everyday. The Inn told me that the children look forward to getting their surprise at the end of the day after they finish treatment. The parents say that's what helps the child get through a not so nice day.

Any ideas? Doing something small may help make us feel productive and good about helping someone else!

Lois

Sounds great...count me in.

Lois

I get hives from excessive sun exposure as well as cold. I also break out on my arms and elbows from sweating.

From what my allergist told me years ago, it is not that unusual for someone with allergies to be "allergic" to sun and cold. The first time it happed I as out on a friend's boat. When I came back, it looked like I had horrible hives.

Lois

Last Sunday I was going up 3 steps to take my Westie out for her to do her business. I haven't been feeling well these past few weeks--getting over a bad cold. As many of us have experienced, even a minor cold can have nasty repercussions on POTS.

On my way up the steps, I got dizzy and lightheaded; next thing I knew I landed on my back- triple ouch. Decided not to go to emergency room since I could still walk. Opted instead to go to my physiatrist ( MD who specialized in getting people back to functioning through modalities other than surgery).

This doctor said I probably injured by facet joints and there was not much to do other than to treat the pain and inflammation and let mother nature take its course. Besides pain medication and anti-inflammatories, he gave me a few samples along with a prescription for a Lidoderm patch. I felt so much better in just a short period after applying it.

My back still bothers me but at least I can semi-function. This comes at a particularly bad time since we will be moving to Florida on June 26 and still have lots to pack and give away.

Have any of you tried these patches? A miracle of relief!

Lois

Maxine, I just thought of something...Can you have the virtual colonoscopy where you swallow something that takes pictures as it moves through your tract? Might at least provide some information without going through sedation etc.

Lois

Hi, Erika....go closer to home. Try the head of the EP lab at the Mayo Clinic in Jax. He is very knowledgeable and interested in POTS.

Still waiting for you to call. Will be back in Florida the first week in July.

Lois

My husband developed anemia with symptoms of light headedness, dizziness, fast heart rate. He went to his

cardiologist who did an EKG and then sent him to our internist (pulmonologist) who ordered the blood work. Turned out he had anemia. He was then sent to a gastroint. doctor who discovered he had a bleeding ulcer.

It took him several months to bring his iron levels up. He took Vytron C - apparently the body absorbs iron better when combined with Vitamin C. He also got his ulcer under control.

When I first got sick (some 2 decades ago), my pulmonologist tested for anemia..one of hte first tests.

Sometimes doctors don't look for the most basic things.

Good luck.

Good luck, Maxine, on your CT scan. I think sometimes docs write the orders to include things so that the insurance pays. BTW, can you get an MRI of your lung? A number of years ago when my problem developed my doc thought there was something in my lung that could be causing the tachycardia. That was back in 1993. At that time, CT scans were used to diagnose lung problems. The radiologist and my pulmonologist thought there was something in my lung that needed to come out. She referred me out of area to Hopkins. There the radiologist who introduced himself with some bravado as the world's expert CT scan reader told me it was not in my lung but was a hernia that I probably had all my life.

My pulmonologist was puzzled by that and she felt strongly it was in my lung. She spoke to the head of radiology at her hospital who recommended an MRI. Guess who was right? My doctor...I did have lung surgery.

Don't jump to any conclusions. Do something nice for yourself to get your mind off things.

I'll be thinking of you.

Lois

What a shame, Lavender.

I ask: has your doctor ruled out other conditions that can cause symptoms like you are experiencing. POTS is not a disease in itself. It is a syndrome - a complex of many symptoms.

Have you tried the basic medications used to treat POTS symptoms - beta blockers, florinef, midodrine, SSRIs, mestinon and the list goes on?

Has your doctor ruled out: thyroid, pituitary gland, adrenal problems? Lyme...other things?

Why not ask your doctor to treat you as if you had POTS to see if you respond? As Rachel said, do the poor man's TTT. Many doctors and their assistants do not have the time/patience/interest to do true orthostatic vitals. Perhaps if you came to the doctor with a journal of your orthostatic vitals, you might make some progress.

Otherwise, I would find a doctor who takes an interest. Back in 1993 very little was published about POTS. My internist was like a lion in pursuing various possibililities. Come 1996 she discovered Dr. Lowe's article.

I have found it takes a doctor with interest and patience (not patients) to act on your behalf.

Better luck to you as you continue your road to hopefully feeling better.

Lois

Oh, my dear Morgan....

You have so many things on your plate and now the gall bladder poops out on you.

First, be sure that you are hospitalized a day before and after the surgery. You need to be very well hydrated.

Re: bankruptcy - perhaps the court can readjust the amount given the lack of overtime income.

Please feel better. Minus my gall bladder, I still have digestive problems.

What is chole syndrome?

Lois

Melissa,

I certainly am not familiar with your situation. Are you getting SSI or SS benefits? If so, I suggest that you contact the SSA to see if you are eligilbe for any benefits under the Ticket to Work program or PASS. Also, check with your state Vocational Rehabilitation Agency. All these agencies are designed to provide assistance to disable people that will enable them to get self-sufficient. Perhaps if you can work after completing your studies that would be a benefit and might encourage assistance.

Please check out ssa.gov and then look for information about the Ticket and the PASS program.

Good luck and please don't give up.

Lois

I hope that you can find assistance. Check with your state and local governments to see what aid can be provided. Also, sometimes drug companies can make drugs available at no cost to people in dire straits.

Beta blockers are not expensive. I believe there is a generic for proamatine that is not that expensive. I also take zoloft for POTS. That is also available as a generic.

Perhaps if you can try some of the generics you may feel better and find that you can do some things to improve the quality of your life.

Good luck and please take care of yourself.

Lois

You were fortunate to find a doctor who understands POTS so quickly down the journey.

I wish your son all the best as he goes this journey.

Lois

I found the long-acting pretty effective. Ocassionally I had to use the short - acting for periods of extreme activity or by the end of the month.

Gall bladder problems can be a side effect of octreotide. I would still be on octreotide if not for the fact that it increased my blood pressure too much. Given the problems I was having, we decided to stop.

Search on RHoeldtke for his studies using Octreotide. My insurance did cover the costs. The self-injections were easy.

Lois

Glad octreotide has made life more bearable.

I used the long acting octreotide with supplements of the short acting as needed.

Frankly, I am surprised that more doctors/patients have not given it a try.

At my peak on octreotide, I could stand for about 50 minutes without significant bp and hr changes. That certainly was not the case. It took about 7 months before I saw such results.

If I were suffering so from POTS and had not already given octreotide a try, I would be asking my doctors about it. The big drawbacks are cost (my insurance covered it as a prescription drug and I could get it mail order), speedy action in the digestive tract (a plus for some) and eventually gall bladder problems.

What other route had you taken before this more radical approach?

I'm sure we would all be interested in knowing.

Where is your neurologist located?

Thanks and good luck

I benefitted greatly from octreotide. I didn't have blood pooling.

I didn't have to stay in hospital for monitoring.

I learned to give the injections (every few hours at home) - no problem. Eventually, I could use the monthly long acting octreotide.

I was getting great results. Eventually I had to stop because of high blood pressure and gall bladder problems. At that point my endocrinologist and my internist did not want me to continue.

It was fine while it lasted - about 10 months.

Blue Cross covered the cost of the injections.

Thanks for your replies.

I know someone who had such a CF leak. Actually she did not have a runny nose. She had headaches; vision problems; neck and back pain; fatigue and some cardiac rhythm problems. Moreover, she felt better laying down flat.

She saw a doctor in LA who treated her with a patch.

Very interesting...when reading more on the internet about this: sometimes doctors diagnose chiari in patients with Cerebral Fluid leak.

Just a thought.

Lois

Funny you should mention this.

Someone recently told me about Hopkins' Center for Marfans Research and a Dr. Dietz (spelling). He has done pioneering research on the use of an Ace-inhibitor in the treatment of Marfans and aortic rupture. The drug is called Losartan. This person thought his office might also be establishing an EDS data base.

Hope this is useful to you.

Just wondering if anyone has been evaluated for a possible cerebral spinal fluid leak in relation to POTs symptoms. I understand it can cause POTs-like symptoms.

mestinon and labetalol plus zoloft - my basic regimen; add a little procrit from time to time...

that's what seems to make the most difference.

Hi, Erika:

So sorry to hear all your problems. My POTS started after a horrific ear infection.

I live near St. Augustine.

I see Dr. Kusumoto at the Mayo Clinic. He has a great deal of interest in POTS. There is also a neurologist there who I first so (can't think of his name) who knew about POTS. I think Dr. Kusumoto has a much more current knowledge base.

Regretfully, there is no magic bullet. I got sick when I was about your age. I worked for a number of years- loads of absences, complete exhaustion when I came home from work; complete exhaustion during the weekend, and then the whole thing started over again the next week. Fortunately, my employer let me work at home so things settled down somewhat until I got GI problems and then breast cancer.

If you would like to talk, please PM.

Good luck getting into the Mayo Clinic and getting some relief.

Lois

There's also been a debate about whether President Abraham Lincoln had Marfans:

In the early 1960s, a physician published a paper which stated that President Abraham Lincoln had Marfan syndrome, a connective tissue disorder. The diagnosis was based on physical observations of Lincoln: the fact that he was much taller than most men of his day, with long limbs, an abnormally-shaped chest, and loose (lax) joints (based on written descriptions).

Since then, other physicians have disputed a diagnosis of Marfan syndrome for Lincoln. Most recently, at a scientific workshop held in October 2001 in Cairo, Egypt, the scientists gathered there felt that there was not enough scientific evidence available to definitely diagnose President Lincoln with the disorder.

Most recently, there was some speculation that Michael Phelps has Marfans. Interesting to note who is Hospkins doctor is:

In his book, "Michael Phelps: Beneath the Surface" written by both Phelps and Brian Cazeneuve, he writes about the scare of the possible diagnosis of Marfan syndrome:

"My heart rate was accelerating and Bob suggested I see the doctor. Because I was very flexible and had long hands and feet. I had some early symptoms of Marfan Syndrome, a disease that affects connective tissues and can be fatal if there is leakage to the vessels that lead to the heart. If you reach out your arms and form a T and your wingspan is longer than your height, you can be at risk. In my case, those measurements have always been very close. I didn't know at the time why the doctor decided to look into this. My mom and Bob didn't want me to freak out, so they told me it was simply a good idea for young athletes to have an EKG test in order to look at the heart.

Fortunately everything was, and still is, okay. I have been tested once a year ever since at John's Hopkins under the direction of Dr. Peter Roe and the tissues are strong, the aortic rout is clear and my heart is in good shape - as long as my Baltimore Ravens are winning."

I believe many young athletes go undiagnosed with Marfans until they collapse on the basketball court or other arena. Phelps swimming career has raised some concerns about whether youngsters will forgo sports if they possible have Marfans.

I myself had a cousin who passed away from Marfans when he was in his 40's.

Lois

Rachel,

Thanks for the information. Who gave you the prescription? Wha were your hemoglobin levels? What was the maximum hemoglobin level you needed to reach before you were to stop hemoglobin.

Where did you get the prescription filled?

Thanks,

Lois

I have been using a CPap for about 2 years and recently changed to a BPaP machine. The BPaP is gentler for me because of COPD related issues.

I use a nasal cusion mask.

Frankly and honestly, every night Iuse the machine. But, not one night goes by, that I don't realize this thing is on my face.

One of the biggest benefits I notice is that I no longer have to keep the bedroom freezing at night so I can get "air."

Perhaps the biggest benefit is the fact that my husband can now get a good night's sleep.

I think it is important to use the machine because if one truly does have sleep apnea you run the risks of all kinds of illnesses (heart/stroke) from the apnea. So, it is really a matter of dealing with the mask, trying different ones, and adjusting it different ways.

I also use Provigil during the day to help improve my wakefulness and brain fog. As a result of the sleep apnea, I no longer have to fight the insurance company over using Provigil for POTS.

Good luck on your sleep study.

I think it is a hoot that after they wire you all up for the study and tell you that someone will be monitoring you at all times, they then tell you to go to sleep normally. What a hoot!

Lois