Lenna

My adult son is hearing that Florinef is now unavailable, with no predictions about when it will be produced again. Are others hearing the same thing, and how are you dealing with this? I’ve read on this forum that you can’t just abruptly stop taking florinef...it sounds like you need to wean off slowly. He’s been on Florinef for years. He has POTS almost completely under control and lives a normal life, but takes medications. I’m so worried that this situation with florinef will cause him to relapse. 

Yes, my son has been told the same thing. He has enough to last him another 2 months, but then will have a huge problem on his hands. What are others doing about this?

I haven't been on this site for a long time, because my son is about 85% recovered from POTS. But I logged on today and saw this post from last January. Losartan (or rather, the brand Cozaar) gave my son his life back. He is someone who is too vasoconstricted, so meds like Midodrine were the worst thing he could take. It took years to figure that out, and cost him his high school years, but I'm happy to say that he is now a Phi Betta Kappa college senior!

Domperidone works great for my son.

There was an article today (part 1) on the front page of the Boston Globe that is a horrifying story of parents who have lost custody of their teenage daughter who has mitochondrial disease. The parents have been too "aggressive" in trying to get her the help she needs, and two hospitals are in a power play about whether the girl's issues are medical or psychiatric. So one of the hospitals filed a "medical child abuse" claim against the parents, took the girl off her meds and put her in a psychiatric ward, where she has languished for months.

I read the article and thought "There by the grace of God go I." These are both highly respected hospitals that have treated my son for POTS, and in fact one of the doctors involved (one of the good guys) is still his gastro. I can tell you that there were times when I was very aggressive in getting my son the treatment I felt he needed, and I'm sure every parent of a sick child can relate to that. The article also mentions that the girl acted sicker when her mother was around. What kid doesn't behave that way?? This story is heartbreaking and confusing. I'm grateful that my son is now legally an adult so this is not something I need to worry about as I continue to aggressively advocate for him.

I wonder if any of you agree that it would be less likely for doctors to be so quick to put a teenage boy in a psychiatric ward as they did with a teenage girl.

You can't log into the article without a subscription to the Globe, so I copied it onto a Word file and put it on Dropbox. You can read it by clicking on this link. It's a very long article, with part 2 coming on Monday.

https://dl.dropboxusercontent.com/u/24675071/A%20medical%20collision%20with%20a%20child%20in%20the%20middle.docx

Hmm this subject seems to be my territory. First of all, in my opinion, Losartan is no good. The theory is fine but Losartan seems the worst of the whole drug class of ARBs. I've made extensive research on ARBs and that while Losartan has the most history and studies, to me it is the worst of them all. Here is a comparison of the ARBs:

http://bjcardio.co.uk/2010/05/comparative-arb-pharmacology/

Particularly the insurmountability of Losartan. Basically even if it does work, it will stop working soon enough - so in my opinion no good for the long term. This is an interesting theory but aren't ARBs supposed to be bad for people with POTS according to the website we are on now? http://www.dinet.org/what_to_avoid.htm

I'm not a frequent visitor to Dinet anymore because my son is so much better these days, but I do occasionally check in, and saw this post today.

Losartan has literally given my son his life back. He spent 3 and a half long years suffering daily with dizziness, fatigue, nausea, you name it. He went overnight from being a straight A student to being unable to attend high school. After 3 years of trying meds like Midodrine, Mestinon, beta blockers, Clonidine, etc., none of which helped him, we figured out that he has a nitric oxide deficiency and started him on Losartan (Cozaar). Within months, he was able to take SATs, pass a GED exam, get a part-time job, apply for colleges, and now he is a straight A student in his sophomore year (living in a dorm) at a prestigious university. He still has POTS, but Losartan makes it possible for him to function.

He has now been on Losartan for more than 2 and half years. Losartan is not a good drug for everyone, but it is a good drug for SOME. No two people have the exact cases of POTS and what works for one person may not work for another. Blanket statements that a drug is bad are not helpful.

I thought some of you might find this interesting. This case was written up in Massachusetts Lawyer's Weekly, September 30, 2013, page 6. I'm providing the link but I don't know if that will work, so I've also cut&paste the article. Sorry that it's not in the easiest format to read. What do you suppose the medication was?

http://www.pageturnpro.com/Publications/201309/290/17516/pdf/130247014691290955_MLW%20093013_web.pdf

Handicapped student sues college over meds, shots

$1 million settlement

The plaintiff was a 29-year-old female who had
completed an outstanding academic career at
Oxford University in England, obtaining her
master’s degree in Celtic language and literature.
In 2010, she was awarded a scholarship at a
prestigious Massachusetts university based on
outstanding academic performance, strength of
character and potential for leadership in the field.
The plaintiff had informed the local university
of her various medical conditions that qualified
her as a handicapped student. Specifically,
she suffered from Postural Orthostatic
Tachycardia Syndrome, or POTS, a malfunction
of the autonomic nervous system that causes
rapid heart weakness, fatigue and a severe
drop in blood pressure. Sudden fainting spells,
migraines and fibromyalgia, among other afflictions,
are also associated with the disorder.
The school advised her that student health
care coverage would pay for her medication
and for administration of the medication,
which costs $2,000 per injection. Later, the university
reversed its decision. After several communications,
the plaintiff was forced to obtain
the medication on her own in England; however,
she continued to ask for assistance with
the administration of the medication.
In response, the university and its physicians,
who were employees of the Student Health
Care Clinic, advised the plaintiff that they were
not able to help her with the administration of
the medication but offered to train one of her
friends, who was not a health care provider.
The plaintiff subsequently used Skype to
consult with her cardiologist in Great Britain
in an attempt to administer the medication
herself. She failed and, within days, collapsed
in an MBTA subway station. She was taken to
a Boston hospital, where she was admitted and
remained hospitalized for five weeks.
Unable to return to her academic studies,
the plaintiff was transported by medical flight
to Great Britain, where she was re-hospitalized
for another two weeks. Thereafter, she remained
under the care of multiple medical
providers, including mental health workers
who were able to stabilize her condition.
Plaintiff’s counsel discovered that there was a
provision in the student health care plan that
specifically covered the plaintiff’s medication and
its administration. That contradicted a statement
made by the university’s medical services chief,
who at one point visited the plaintiff in the hospital
and advised her that the university and insurance provider had “changed their policies”
and would be able to provide payment and administration
of the medication in the future.
As a consequence of the university’s conduct,
the plaintiff suffered a significant setback
in her condition, as well as her academic and
professional achievement. She lost the opportunity
to complete her fellowship. However,
once her condition was stabilized, she was able
to complete her education at Oxford.
The plaintiff filed suit against the university and
several of its individual representatives, alleging
discrimination, retaliation, violation of Title III
of the Americans with Disabilities Act, violation
of Section 504 of the Rehabilitation Act of 1973,
breach of contract, retaliation, and breach of
covenant of good faith and fair dealing.
The defendants presented evidence of reasonable
efforts to meet the plaintiff’s requests
for reasonable accommodations, questioned
whether the provision of medication fell within
the realm of a reasonable accommodation,
and presented causation issues related to numerous
prior flare-ups of the plaintiff’s medical
condition in Great Britain.

Action: Civil rights
Injuries alleged: Discrimination, resulting in
setback of medical condition
Case name: Withheld
Court/case no.:Withheld
Jury and/or judge: N/A (settled)
Amount: $1 million
Date: June 12, 2013
Attorney: David P. Angueira of Swartz&
Swartz, Boston (for the plaintiff)

Issie, actually, Danny did NOT do particularly well with Losartan,the generic version of Cozaar. It's only the brand Cozaar, made by Merck, that has been helpful. We don't know why.

My son has low flow POTS, and is vasoconstricted. Doctors start out by assuming that POTS patients are vasodilated, and prescribe Midodrine. This doesn't work for everyone. Midodrine constricted my son's veins even further, and that was not what he needed! These days he takes Cozaar (Losartan) to dilate his veins, and he is doing really well. Not perfect, but he's enjoying life again.

Ask your doctor if you can try domperidone. If you're in the U.S., you'll need to get it though a compounding pharmacy. This is the only thing that has consistently controlled my son's nausea.

BTW, you can get it without a prescription from overseas (it's called motilium) but it doesn't work nearly as well for my son as the compounded variety.

Oh yes, I know about the over-the-counter version. I thought you meant it could be compounded in Canada. For some reason, a compounded version worked better in the past for my son than Motiliu.

Anyway, thanks!

Many of us with scleroderma take it for esophagus dismotility. We can still get it in Canada and many US people get it shipped to them from Canada

Can you IM me with the name of a pharmacy in Canada that will send it to my son in the U.S.?

All the friends I've known who used it were getting it shipped from Canada. As long as you have an Rx you can fax or scan to them, you can have it shipped to you.

I was told by the Canadian pharmacies that I called that Canadian Federal law requires a prescription from a licensed Canadian doctor. Have your friends gotten it from Canada recently?

Domperidone has been a miracle drug for my son's nausea for the past few years. He was getting it from a compounding pharmacy in Massachusetts until last month. At that time he was told that Massachusetts isn't being allowed to compound domperidone anymore. They referred him to a pharmacy in Maine that filled the prescription and sent it to us. When he tried to get another refill today, the Maine pharmacy said they are no longer allowed to compound domperidone for non-Maine residents, and they are not sure how much longer they'll be allowed to compound it at all.

I have a call in to my son's doctor and am waiting to hear back. Trying not to panic...

Is anyone else having trouble getting domperidone? Can you IM me with the name of your pharmacy if you're getting it somewhere?

It seems like that's the 'standard' course of treatment for low flow pots - midodrine and florinef. I couldn't tolerate them, and the several hypertensive episodes I had in a short time made me drop both meds.

Has your son had a blood volume determination test, or how did his drs dx the hypovolemia?

Alex

My son is believed to have "low flow" POTS, based on the fact that he was shown to be deficient in nitric oxide during a clinical study at Beth Israel Deaconess. That means he is vasoconstricted, and Midodrine is absolutely the wrong medication for him. He is now on Cozaar (Losartan), which is a vasodilator, and Florinef, and his POTS has improved to the point where it is an annoyance but no longer rules his life.

If anyone has a teenager that has recovered from POTS, I would love to hear their story. It's so hard watching my son go through all this.

My son developed POTS more than 5 years ago, when he was 15. He missed so much school that he wasn't able to complete his high school requirements to graduate. His life had come to a stop. It felt very hopeless and devastating. Then, when he was 18, he participated in a study at Beth Israel Deaconess Hospital. What he learned through that study is that he is deficient in nitric oxide and therefore is vasoconstricted. So at that point he began to avoid vasoconstricting medications like Midodrine and Adderall, and starting taking Cozaar (Losartan), a vasodilator, to increase his blood flow. Although he still has POTS, he is very much improved. He took the SATs, got his GED, applied to college, and just finished his freshman year at an excellent college with excellent grades. He even lived in a dorm. I wish we knew why he is deficient in NO, but maybe we'll find out someday and be able to treat the root of the problem. I guess if I could make one suggestion, it would be to participate in any studies that you qualify for; find out as much info as you can about your particular situation.

Hi, this was the subject of a recent thread. Here is the link: http://forums.dinet.org/index.php?/topic/23187-stories-of-recovery/

Lenna

Rich, my son has been seeing Dr. Freeman for several years. If you want to know more, send me a PM.

Lenna

I would also really like to know what helped people get better. I know it can be individual, but it sure would inspire me to know. Thanks.

My son participated in a study at Beth Israel Deaconess Hospital. What he learned through that study is that he is deficient in nitric oxide and therefore is vasoconstricted. So at that point he began to avoid vasoconstricting medications like Midodrine and Adderall, and starting taking Cozaar (Losartan), a vasodilator, to increase his blood flow. Although he still has POTS, he is very much improved. I wish we knew why he is deficient in NO, but maybe we'll find out someday and be able to treat the root of the problem. I guess if I could make one suggestion, it would be to participate in any studies that you qualify for; find out as much info as you can about your particular situation.

My son is a lot better. Not totally, but enough to regain control of his life. He is just a few weeks away from finishing his freshman year of college where he lived in a dorm and excelled academically. This is a kid who couldn't make it to his high school classes for 3 years because he was too ill. So don't lose hope!

off-the-chart low haptoglobin.

My son has low flow POTS. The Merck brand of Losartan - Cozaar - has improved his symptoms dramatically.

Brenda, Cypro is a antihistamine. It's often used for MCAS, which Danny does not have. But its side effects are appetite stimulation and drowsiness, both of which have helped Dan a bit. His gastro doctor put him on it.

My computer broke and typing on my iPad is a pain for me! I got your PM and will answer next week when my laptop is fixed. Sorry!

Lenna

Hi Brenda,

Danny takes 1 mg. of melatonin (10 mg. is such a high dose! How does Liz feel in the morning???) and he also takes 4 mg. of cyproheptadine. The cypro was prescribed to stimulate Dan's appetite, but drowsiness is a side effect so he takes it at bedtime. The combination of the melatonin and the cypro seem to have helped with his insomnia -- though he still wakes up feeling POTSY.

How is Liz doing otherwise?

Lenna

My son is currently in college. He just finished the first semester of his freshman year. It's going great so far - far beyond what I had dared to hope. He is living in the dorm in a medical single. When we saw his room on the first day, we were very dismayed because it's in a very isolated part of the dorm. He (we) had some real concerns about being able to meet new kids and socialize while living in that room. But as it turned out, he's met plenty of kids while also having a quiet room where he could have undisturbed sleep. It was the best room they could have given him.

Here are my suggestions:

Let the school know that not only does he need a single, but stress that he needs one in a quiet location away from lounges and elevators, etc. Chances are, they have a few rooms in a really quiet spot.

Buy a white noise machine for his room. We got one on Amazon.

Get him used to sleeping with ear plugs now. It takes a while to get used to it, and my son tried 3 or 4 different kinds before he found one he could tolerate. He uses Ohropax wax ear plugs, also from Amazon.

He starts each morning with a blue light shining on him. It's supposed to increase energy. He's not sure if it's really doing anything but then again, he thinks maybe it is. A sleep doctor recommended it. It's called Philips goLite Blu Light Therapy Device. You can get it from Amazon or costco.com.

Other accommodations that the college gives him are 50% extra time for exams, and willingness to TRY to reschedule morning exams to the afternoons or evenings.That was only an issue once so far, but they did reschedule it for him.

Also, the school gave my son a device called Live Scribe to use during his lectures. It lets him audio record the lectures and somehow he can integrate his notes with the audio recording. I've never actually seen it in action, but he says it's helpful. He still has to be physically present in the lectures but if he's really tired and can't concentrate, at least he can review the recording later.

Some schools will have some classes accessible online as well. That would be a huge help. Ask about that.

I hope that helps! Good luck!

Lenna