Can A Diaphragm Spasm Be Caused By Pots?

[looneymom]

Two years ago when my son was in the hospital, a neurologist noticed that my son looked like he was gasping for air. At the time it looked like some sort of spasm in his diaphragm. The doctor did get test ordered and my son failed the lung test. He failed due to "lack of effort". When you are sick, you don't fail due to lack of effort.

My son's blood pressure has been running low the last couple of weeks. I took it awhile ago and it was 98/65 and heart rate was 123. I'm waiting on a call from the doctor. So nobody needs to panic !

Today, I saw this strange spasm occur again. Tyler is having more trouble with his vocal tic and he is more shaky while transferring to his wheelchair. So I'm watching him closely and trying not to show any fear. However, when I first noticed what was going on, my biggest fear is that he is going to go totally down and not be able to transfer in and out of his wheelchair. Tyler weighs 180lbs and is 5' 11" or more and he is 13. He still has a few years of growing to do yet. His grandpa was 6' 4''.

The weather is cooler, humid, and rainy today. I'm wondering if this happens to anyone else when their blood pressure is running lower or could it be just related to the weather change. Or is Tyler getting sick with a virus? Or is this part Of PANDAS?

BTW, Tyler is going to be in a study for PANDAS. He will be having some more testing done soon.

Rachel

[Guest Hanice]

I wrote on here over a half hour ago and it didn't post all the way!

Hows he doing now? This only used to happen to me as I fell asleep when my pots symptoms fisrt started. Its great that you kept it calm and collected. I hope the doctor called you already and gave you good advice and I hope Tyler is all better again.

Tyler is a BIG BOY! I imagined him all little looking wow! Please let us know what's up.

[Guest Alex]

POTS is a syndrome, a collection of symptoms, so I doubt POTS can cause diaphragmatic spasms, but I have read about neuropathy being capable of inducing such symptoms, and definitely PANDAS.

Out of curiosity, has any of Tyler's doctors ever suggested mestinon for him?

http://jama.jamanetwork.com/article.aspx?articleid=227645

DIAPHRAGMATIC SPASMS IN ANIMALS PRODUCED WITH A STREPTOCOCCUS FROM EPIDEMIC HICCUP PRELIMINARY REPORT

a bit hard to read, but here are some ideas:

"The etiology of epidemic hiccup is obscure. Its occurrence at times in epidemic proportions suggests a microbic origin. Epidemiologic and clinical facts suggest that the cause of the condition is similar to the cause of epidemic encephalitis. Hiccup frequently occurs in cases of epidemic encephalitis. The two diseases occur simultaneously in many localities and over widespread areas of population.1 Epidemic encephalitis has occurred in persons who have had recent attacks of uncontrollable hiccup, as well as after prolonged contact with patients with epidemic hiccup.2...The tonsils appeared normal on inspection, but a considerable amount of pus was expressed from each, and a suspension of the pus obtained was made in 2 c.c. of salt solution.... Animals were inoculated directly with the suspensions... a remarkable train of symptoms developed, in which rhythmic clonic spasms of the diaphragm were the striking feature (Fig. 1). The spasms of the diaphragm varied greatly in severity and duration. In some animals the spasms were mild and were noted for short periods at one or more intervals only, and recovery was the rule. In others they were intense, associated with hiccup, and continued with little interruption for many hours, often to the point of complete exhaustion"

I hope this helps

Good luck with the study!

Alex

[Guest Alex]

forgot - the article I quoted above is actually from 1921 ...quite some time ago.

[looneymom]

Hanice - I will keep you updated. Still have not heard from the doctor.

Alex - I mentioned Mestinon in my last e-mail to the cardiologist. Tyler cannot stand at all. Could Mestinon lower his heart rate too much if he is only able to sit up or recline? I'm willing to try Tyler on the medication. However, I do know that the AAG test was negative for everything and he has been tested for MG which was also negative. I'm wondering if our cardiologist is afraid of side effects it could cause Tyler, because both of these test were negative. However, I'm wondering if this medication is used with Tourettes or PANDAS. Still need to do more research.

Rachel

[Guest Hanice]

Will be waiting to here from you.

[Guest Alex]

I'm unaware of mestinon being used for PANDAS but it is definitely used (with various degrees of success) for POTS and OH, particularly for the autoimmune variant of POTS.

As far as the positive AAG antibody - that is not a "prerequisite" (so to say) for the use of mestinon. This med can reduce the standing HR and most importantly it can boost one's standing BP without changing the supine one. Also, a lot of those taking it report a boost in their energy levels.

Here is a post I made recently that explains more on how it works

http://forums.dinet.org/index.php?/topic/24327-mestinon-question/?hl=mestinon

The "main" side effects are gastrointestinal, but some don't get any side effects.

[looneymom]

Hi Everyone

The cardiologist did call this morning and Tyler has been put back on his normal midodrine dosage. At least his heart rate stayed down with this medication. The cardiologist also suggested to increase his salt levels to help with blood pressures. It will be interesting to see if the midodrine will work for him again like it did in the very beginning. I'm wondering if his body became numb to the medication and it will work better since he has been off it for three weeks. I've heard this can happen on some medications. Just wonder if midodrine falls into this category.

Desmopressin just kept his heart rate going higher and his blood pressure dropping lower. Yesterday evening, Tyler was also having trouble transferring in and out of his wheelchair. The cardiologist thinks this medication may have started working against Tyler.

We did talk about the mestinon again and that is something the cardiologist will consider if we can get Tyler standing and walking again. Tyler has an appointment to be seen by a new neurologist that works with PAN/PANDAS patients in November. Other blood test are going to be ran this week to rule out paraneoplastic antibodies.

Rachel

[corina]

Thanks for the update Rachel. You and Tyler are on a very difficult journey. I'm glad that his cardio (and other doctors?) is (are) guiding you. Sending good thoughts for Tyler and you and hope the midodrine will work for him.