jjb

No correlation w/ menstrual cycles, but certainly with foods. "bad" foods are a common trigger for me. Dopa antagonists are too.

When I was younger, I saw more consistent cycling ... as in every 4 months go through several weeks of significant symptoms. Id' have symptoms of pain, high fever, fatigue, ortho intolerance etc. Back then it was blamed on chronic lyme disease. While the LD certain triggered more dys, I don't think I have chronic LD, I think the dys symptoms are related to something else.

My daughter has cycles too. Her cycles/clusters have been occurring every two to three weeks. He o2 drops, becomes tachy, flushes .. gets dizzy, and usually has nausea and vomiting.

It is trickier with her though as she has dys, EDS, epilepsy & carnitine def. We just don't know what is what with her.

Hi jjb,

I don't know much about you, but what type of cycle have you noticed? There has been a lot of discussion about symptoms changing with the menstrual cycle - if this pertains to you - have you noticed there is a monthly cycle to the symptoms?

Otherwise, I can say that in general my symptoms cycle in intensity through the day, with the first half of the day barely tolerable, and then occasional late evenings (usually 9 to 11 pm) where I feel mildly functional. I read some threads on the forum where other people experienced a similar circadian cycle to their symptoms.

Have you tried writing down everything that you do, eat, etc. to see if there is a relationship?

Best wishes in finding a way to spend more time in the "better" part of the cycle!

~ Broken_Shell

Hi there. I get the chlorine taste every now and again. I don't know what it is. I get it in my mucous as well as my tears.... As you can imagine, the tears burn like heck when I get this.

About the swallowing, yes, could be EDS related ... as you said maybe the instability, but also if you have low tone. Of course low tone is also common w/ EDS. But the other though would be chiari malformation. This too is common with EDS. The only accurate way to dx chiari in an EDS person is a fMRI. A reg MRI often times won't pic it up.

I have an article on this topic of you are interested.

All of my dys symptoms tend to come and go. They have never been constant.

The seem to cluster and cycle somewhat ... and there are certain things that can trigger or worsen a cycle.

I am wondering if any of you have the same?

If so, would you happen to know if there is data that talks about the nature of these "cycles"

Yes Suzy, that is what I meant. Wow, that is interesting that yours was lowered as you were more upright.

I am usually able to tell when mine is lower. I get an odd almost metallic like taste in my mouth as well as a slightly unuual feeling in my mouth .... almost a numb feeling.

For me, exercise will trigger it and so will aclohol. I am pretty sure I have a true alcohol intoerance.

After a few sips I am very flushed and it only takes one glass of wine for me to be feeling pretty sick.

Anyway, just tyring to figure out if these things are ever dys related.

Hi, I don't mean to sound like a dumb bell, but I just want to make sure I am right here. O2 means oxygen, correct, and by desats you mean your oxygen level desaturating or dropping correct? Sorry not up on alll these things! If that is what it means then YES! I have been really worried, because many times when I have been having breathing problems my oxygen level is at 90-95. And the last time I was in the ER, (unfortunatly) The back of my bed was up, and my oxygen was at 90%. As the back of my bed was lowered it went up to 100%. I don't know what this means, but would really like to find out.

Suzy

Does anyone have problems with o2 desats without a significant apnea problem?

If so have you been given an explanation for it?

Anyone have morning anxiety ro morning tachycardia? If so, do you have a reason for it?

Are these dys related?

I am interested in the correlation too. The neuro I saw, seemed to imply my supposed IC is related to dysautonomia. I go for a thorough eval in a couple fo weeks, I will try and get more answers re this.

The doc I will be seeing is Dr Peter Novak in MA.

Do you have any opinions or questions to ask me to see if a specialist could help me with my POTS nad IC? Thanks in advance.

I get dejavu clusters. Usually when sleep deprived or as med side effects.

They are likely simple partials seizures but I wanted to mention in a book on autonomic dysfunction I have, it states it can be difficult to differentiate between a simple partial seizure and autonomic activation and gave dejavu as one of the SP examples.

SO I have been wondering if deja vu can be yet another quirky autonomic thing.

Incidentally, seizures can also look a whole lot like psychosis, as in TLE. It is imp to keep that in mind. Often psych pts are wrongly DXed and never get the seizure treatment they need.

He also thinks my autonomic episodes end up with a NARCOLEPSY..with cataplexy. ITs not the drop t othe floor kind..its a slower version..where I end up looking unresponsive but I can still hear. He still has to finish the testing for that.

So..what do you guys know?

Thanks..Jan

I am SOOOOO interested in this.

My daughter has similar episodes, like you say, the slow type but we are trying to figure out what is autonomic dysfunction, what is autonomic seizure and what may possibly be cataplexy.

I think you and I may have connected once last summer on another forum about this topic, no?

We will be seeing an autonomic neuro next month. I am hoping he can help us to sort out what is what.

Did the PT use the Beighton Scale?

Here is is a link to the scale:

Beighton scale

And here is the criteria for hypermobility:

Major Criteria

* A Beighton score of 4/9 or greater (either currently or historically)

* Arthralgia for longer than 3 months in 4 or more joints

Minor Criteria

* A Beighton score of 1, 2 or 3/9 (0, 1, 2 or 3 if aged 50+)

* Arthralgia (> 3 months) in one to three joints or back pain (> 3 months), spondylosis, spondylolysis/spondylolisthesis.

* Dislocation/subluxation in more than one joint, or in one joint on more than one occasion.

* Soft tissue rheumatism. > 3 lesions (e.g. epicondylitis, tenosynovitis, bursitis).

* Marfanoid habitus (tall, slim, span/height ratio >1.03, upper: lower segment ratio less than 0.89, arachnodactily [positive Steinberg/wrist signs].

* Abnormal skin: striae, hyperextensibility, thin skin, papyraceous scarring.

* Eye signs: drooping eyelids or myopia or antimongoloid slant.

* Varicose veins or hernia or uterine/rectal prolapse.

That is only the criteria for joint hypermobility, not EDS.

EDS criteria depends on type.

I cannot stress enough the importance of finding a doc that really truly understands EDS if you want to 100% rule it out.

Even good geneticists sometimes don't get.

We first saw a head geneticist that had an interest in connective tissue disorders get a lot wrong w/ me and my daughter.

There is still a lot of data this is not quite mainstream.

I couldnt sleep well last night because i wonder if my mild Mitral valva prolaps means that i have the vascular type of EDS?

What other symptoms come with this form of EDS? i have no joint problems at all, so i dont really know what to do now?

MVP is very common. I have mild MVP so do my sisters.

EDS symptoms can vary quite a bit. If you are concerned, I would go to the EDNF web site and familiarize yourself with the symptoms.

You can also look at the Beighton scale.

Here is a link to the EDS site:

EDNF I think the site lists EDS doctors around the world.

Here is a good article on EDS describing the different types: EDS article

and here are some pics of EDS:

EDS images

A person may not ever realize they have abnormal symptoms.

I have always bruised quite a bit, my joints were always clicky and hypermobile, I never considered my skin to be overly stretchy. I always thought all of these things were normal but it turned out I had many abnormalities join and skin wise.

... if possible go see Franomano or Nazli...

Where are they located?

Hollie

MD

Wow guys, thanks!

I'm not sure... I usually have pain all over my whole left side, arms. legs, etc. Not just the flushing. Over last weekend, my whole left arm actually turned a purple bluish color.

When exercising, I turn uniformly red. This left sided stuff only happens about once a month for about a week at a time. I can't seem to figure out what triggers it.

Thanks again everyone!

Angela

I get partial flushing on face and chest sometimes.

But Ava has had what you described a few times. When a baby, her entire left side would be purple but it was also cold. When we took her in to pedi, her BP taken w/ BP machine was 150/100 I think (very high for a baby). They said it was probably a false reading, but when they took her bp w/ manual cuff it was also high, just not as high.

They did not know for sure what was happening but suggested it could have been a CNS thing.

I don't know anything about Heilkunst Homeopathy, but have tried homeopathy. It has never done a thing for me either. I have also tried it w/ my daughter that has epilepsy ... it triggered a huge status seizure. The NDs response was sometimes you have to get worse before you get better

We also both see an osteopath. I highly recommend it if you can find yourself a good DO. They are very interested in the ANS in general and understand how a quirky one can lead to other health issues.

Many also do prolo. Prolo can be great for folks w/ EDS or hypermobility issues.

I think there was a DO at the EDNF conference last year talking about prolo therapy.

It is VERY important to get thoroughly tested by a doc knowledgeable with EDS. EDS is more than just being flexible and having stretchy skin.

Many know of VEDS (vascular type) as being dangerous, but CEDS (classic type) can have some pretty dangerous symptoms as well.

I had an MRI that showed a slightly bulbous vessel in my neck. The radiologist did not think anything of it and did not tell my PCP. Well when I got copies of my MRI and brought to the NIH, I was told it needs to be followed. Aneurysms can occur with CEDS. No I am to get an MRI every year. Other dangerous symptoms are bowel ruptures, placental abruptions and so on.

I had an abruption, my mom had an emergency hysterectomy after nearly bleeding to death from period, my grandmother had a bowel rupture during preg and later died from surgery complications, my sister required transfusion after giving birth, a number of stillborns & MCs too.

If you join the EDNF, you can order a disk that details all of the issues that can occur w/ the different types of ehlers danlos. There is also important information re surgery. There are special techniques surgeons should use with a person that has EDS.

Please get checked ... and again, if possible go see Franomano or Nazli. Unfortunately just any geneticist simply is not enough ... and certainly rheumys often are not enough either.

I saw Dr Nazli last year as part of the NIH study on EDS.

She carefully looked at all of my joints. I did not realize until then that I likely had multiple dislocations and even more subluxes (partial or incomplete dislocations)

In fact, I was told my shoulders are always in a subluxed position.

I think when you have EDS, dislocations and subluxes are not always so noticeable.

If anyone suspects they have EDS and you can get to see Dr Nazli or Dr Franomano, it might be extremely beneficial for you as they may be able to explain much more about your health issues than just being flexible.

I am very interested in the correlation between dysautonomia & seizures.

When my dysautonomia is at it's worse, I likely have simple partial seizure symptoms, frequent clusters of deja vu, visual distortions and symptoms that could be either autonomic seizures OR just plain ole autonomic dys.

I have a brother with the convulsive tonic clonic seizures. he also has chiari malformation. Where you have the tethered cord and cranio-cervical malformation, I am wondering if you have chiari and/or a connective tissue disorder.

POTS commonly occurs w/ both. I have heard from many that have chiari, also have seizures and some have had seizure control once chiari issues resolved.

My daughter has appears to also have dysautonomia. She also had a stoke at birth and now has epilepsy. She has only had one generalized convulsive seizure, the rest have been non-convulsive complex partial (awareness impaired ... stupor like)

and nowadays simple partial autonomics.

ere is a good article: Epilepsy and te Autonomic Nervous System

From the EDNF site:

Pregnancy in the Classical type of EDS bears risk for the newborn as well as for the woman. Premature rupture of the membranes (if the fetus is affected) and prematurity are common. In the severe (gravis) form of classical EDS, prematurity occurs in approximately 50% of the cases, whereas in the mild (mitis) form, prematurity does not occur more frequently than normal. Breech presentation is more frequent if the baby is affected, due to hypotonia, and may lead to dislocation of the hips or shoulder of the newborn. In the affected woman, extension of episiotomy incisions, tearing of the perineal skin by forceps, and prolapse of the uterus and/or bladder may occur after delivery. As a whole, these complications are more frequent than in the normal population; however, it is difficult to quantitate the incidence of each individual complication in affected individuals, since no good studies exist.

I never thought I had a problem w/ dislocations except TMJ ... I thought I was just "flexible".

Interesting. Although I am definitely not flexible.

jjb and Linda thanks for your thoughts. My sister is taking it one day at a time. She has great support from friends. I'll be spending some time with her soon.

I can't find any literature connecting EDS and placental abruption (not really a surprise). But, I look forward to being able to be evaluated by an expert.

I will try and find you links later, but there is data on abruption and EDS.

I think w/ classic type EDS there is up to a 50% chance of abruption or related issue.

Thanks Maxine. Neither my sister or I have ever had problems with joints or dislocations. Although we both experienced TMJ after wearing braces on our teeth--which never became chronic or serious. It cleared up for both of us within years. However, I do wonder. I don't know the best way to go about getting tested.

I remember your letting us know about your niece's loss. It's horrible that anyone has to go through this. I hope she is managing the grief ok.

I never thought I had a problem w/ dislocations except TMJ ... I thought I was just "flexible". It was not until I saw Dr Nazli that I realized I had probably had several dislocations and subluxations. She said my shoulders are in a subluxed position all of the time. Dislocations are not so obvious when you are so hypermobile. When my joints slip out of place, I can get them back in place on my own.

I would definitely explore the possibility of EDS before getting preg again. We have had several family members w/ late term losses. Francamano is one of the best to see.

My theory is that I just pushed it way too hard, and I paid for it later with an autonomic fever. Does this sound plausible?

Rachel

Sure, sounds plausible.

It does not take much at all for me to get a fever. I can get them w/ allergies, increased activity and so on. For a while there was no known reason for my fevers and they'd reach as high as 105 w/o and preceding symptoms. The fevers thmeselves would just make me feel a little jittery and lightheaded. Back then I'd seen all sorts of docs including infection control, but I did not have a DX of dys so they DXed it as FUO (fever of unknown origin).

I was very POTSY when I was preg w/ Ava and on all sorts of meds. Course many of them made my POTS a lot worse.

hi,

just wondering if exercise has made anyones condition & symptoms worse in the longrun. i mean exercise aimed at getting you reconditioned, not going off and running a marathon!

thanks

I have been reading through this book, Autonomic disorders and came across info specifying leg resistance exercise can help to improve symptoms. I have always found exercise where I have to push off with my legs to be extremely helpful ... but if I have slipped into a "de-conditioned" state I have to gradually get myself into a routine. Otherwise if I push to hard, I will be sick for days. My fave activity is hiking up a steep hill. Otherwise I use a stationary recumbent bike.

That must be so hard for you to be sick and have a child who is sick also. And she is only 4 years old? I am so sorry. Your family sure did get more than their fair share of seizures. That is interesting that you have episodes that the nero thinks are seizures. What do you think? Which do you feel causes it? And if you don't mind my asking does your daughter take any medication for the seizures? And if she does has it made any difference? I sure hope you find find some answers for both you and your daughter about this. Take care of yourself.

I don't really consider us "sick" but know we have quirks that make us vulnerable. When I joined this forum, I was excited to learn there are centers that teach "reconditioning". Over the years I have found ways to recondition myself w/ diet & specific exercises (leg work) as well as avoiding certain meds. The episodes that may be seizures occur when other dys symptoms occur and have all of the same triggers.

My daughter tried two AEDs (seizure meds) but neither worked and the second AED caused a generalized reaction. Right now she is only being treated with a dietary treatment for epilepsy (Low glycemic, a mod ketogenic) and takes benzodiazepines as needed. This treatment has been the most effective for her.

I also wanted to mention, I share the same feelings as some of the other posters about getting a DX of epilepsy. I would NEVER want seizures confirmed via EEG. My feeling is these partial seizures, are really not that big a deal in my case and in many cases and they do not require treatment. For me they do not interfere with anything. I just have funny feelings ... deja vu, etc. Getting a firm DX can have terrible consequences.

My daughters case is different though because her episodes always effect her o2 and HR and make her more vulnerable to SUDEP and she is vulnerable to status.

I have read of some testing centres doing EEG during tilt tests (usually to differentiate syncope from epileptic collapses) - it would be interesting to know what shows on the EEG of someone before and during a syncopal episode.

Flop

The aut neuro we are seeing wants to do an eeg with Ava. As I have mentioned, Ava's seizures are autonomic simple partial seizures. Her symptoms are nausea (occasionally vomiting), pupil dilation, temp spike, flushing, HR spike and o2 drop. If she goes status (prolonged seizure), she remains conscious but cannot speak and becomes paralyzed from head to toe.

We see one of the best epilestologists on the country and she is pretty sure they are seizures but does think they are somewhat unusual, whereas the aut neuro is wondering if the episodes might be more dysautonomia than seizure or perhaps a movement disorder.

Because she tends to cluster, I am leaning toward mostly seizure but wonder if the seizure is triggering a more intense ANS response .... or a more intense autonomic reaction triggering a seizure.

Hi jjb, sorry about the seizures your daughter has. When you say spikes and waves are they on the same test? Mine was abnormal on the left side of my brain for both tests I had 3 years apart. On one test they were sharp patterns, but constant. And on the other they were slow patterns, but constant. I didn't get spikes which is why I don't think they think it is seizures. It is just a constant abnormality. Do you know on your nephew what they said his was abnormal from? Thanks for sharing. And I hope your daughter will outgrow her seizures like ajw.

Suzy

Hey Suzy. My daughters eeg pattern is almost continuous spike and wave in the right hemi and severe slowing in the left. Surprisingly she functions at a "normal" level.

My nephew has a neuro vascular condition (SWS). Typically these kids have severe seizures. My nephew does not, he just as an abnormal eeg. A cousin I have has an abnormal eeg too. But we do have a lot of epilepsy in our family.

I have had hundreds of episodes that were probably seizures (according to neuro) HOWEVER ... after reading through a book on autonomic disorders. I now understand sometimes it is difficult to differentiate between the simple partial seizure (which I & my daughter have) and autonomic activation. I wonder if autonomic activation might show up on an eeg as abnormal.