jjb

Thanks flop for your reply.

The tylenol is NOT for the autonomic seizure but for the non-seizure autonomic activation/dysautonomia (I think non-seizure overactivity in the hypothalamus)

The idea is different than bringing down a fever to prevent a febrile seizure .... or maybe not. Just maybe a febrile seizure is simply triggered by autonomic activation ...which is what we have been saying and wondering about Ava's non-febrile seizures and is why we have trying so feverishly to correct these autonomic issues.

Sorry if that sounds confusing. I am overtired and headachy today.

Anyway, we are not targeting fever, but targeting the specific autonomic "storm" so to speak. The clustering of sudden nighttime tachy, o2 desats, nausea & vomiting, and extreme fatigue.

If the tylenol or ibuprophen work, this neuro believes it will signify that the episodes are autonomic activation without seizure.

I've not heard of paracetamol (tylenol / acetaminophen) being used specifically for autonomic seizures (but I don't know much about autonomic seizures at all) but it certainly is used in children who have febrile convulsions. These kids get a high temperature from a cold or other virus, the fever affects the brain and the fever allows a seizure to happen (fevers lower seizure threshold). For kids that have had these types of seizures their parents are always advised to use paracetamol and/or ibuprofen to lower their fever as soon as they start to get a virus to prevent them having a seizure.

Both paracetamol (acetaminophen) and ibuprofen will lower a fever.

I am guessing that if Ava's temperature rises even a little it could increase the chances of an autonomic seizure. In her case it could be an autonomic problem that causes they fever rather than a virus but it would have the same effect of lowering the seizure threshold.

It will be interesting to see if it helps Ava - keep us posted.

Flop

That is Munchhausen bi-proxy.

Sadly many parents of children with chronic health problems including epilepsy are also accused.

the criteria for both conditions is nuts and there are so many docotrs out there that just have little common sense.

Because these false accusations can be so hurtful, I suggest file a formal complaint.

why did I think that Munchausem was when you did things to make your child sick???

anyway..I am sorry you went thru that. Many docs still look at me like I have 4 heads. I remember two that suggessted counseling. One to really be helpful but the first doctor I saw when I was just starting to get sick told me "it might be in my head" because there was nothing wrong in my blood tests...she told me to see a therapist...i told her i would love to but i wasn't well enough to sit thru a session....

just keep trying....

Erika

Something else interesting aut neuro mentioned was that some neuros do not believe in the autonomic seizure.

This is a very interesting claim.

I have spent the past few years learning everything I can about autonomic seizures. I have most of not all of the articles written by Panayiotopoulos and one of his books (as in Panayiotopoulos Syndrome ... a syndrome of autonomic seizures).

We see P Novak.

There are heat intolerant issues involved for sure, I guess it is not clear to me as to whether the thermo reg issues are trigger a domino type effect causing these episodes (she does some time spike a high temp during these episodes.

Out of curiosity - who is your neuro?

My neuro once suggested tylenol as a way to possibly help with heat intolerance issues. Tylenol works on the hypothalamus - which is certainly involved in the ans - so maybe there is some merit to this.

So we had our follow up yesterday. As I have mentioned, Ava was DXed with hereditary aut neuropathy.

Ava has episodes every 4 weeks or so of autnomic blips I call that cluster. Will begin with a week or so of behavioral changes, a night of her o2 dropping and HR elevating and then the next day extreme fatigue, nausea and vomiting and sometimes more episodes of 02 dropping hr elevating.

We have not been sure if these are epileptic autonomic seizures or autonomic activation that is not seizure.

Anyway, aut neuro yesterday suggested trying Tylenol when we know something is brewing. Give three times a day and see if this prevents and "episode" of the clustering.

If Tylenol does not work, we will try ibuprophen. If that does not work we would try klonopin.

Klonopin I can see working whether sz or non sz.

Evidently, tylenol & ibuprophen help with hypothalamus issues.

Is anyone familar with the use of tylenol or ibuprophen as a treatment to relieve symptoms of dysautonomia?

Thanks,

Jan,

Where are you located? Our aut neuro in Mass alos has an interest in movement disorders.

I am wondering if he might be able to help you in terms of the cataplexy.

This as I have mentioned might be Ava's episodes of "paralysis".

After 6 months since I was tested in the autonomic lab and getting so so answers from his RN.. I get my f/u appt with auto neuro. He aplogizes for not getting back to my PCP to help me get medicated following my evals.

So.. I ask..what IS my dx?? I think he assumed I knew. I did not for sure. He told me I have autonomic dysfunction..and I added POTS?? He said its more global and complex than just POTS. It includes so many other things going on that I am seeing individual specialists..all intertwined.

He looked at me and even referred to a recent seminar and study he attended...and told me we studied women JUST like YOU!! (complex chronic cases) And told me that I am not crazy that I have internal tremors even inside my BRAIN..and added..but I bet others have told you that is crazy, right?

I DO have neuropathy thorugh out my legs/arms. And the muscle fatigue and pain issues grow worse.

I probably have an autoimmune disorder like Sjogren's which IS connected to autonomic disorder.

Those symptoms are getting worse along with the neuropathy. He is recommending the lip biopsy..but if and when I am ready which would confirm its sjogren's.

He even added that the sleep disorder..GI stuff is all related.

He is allowing ME to choose my course of tx/evaluations. He is recommending cutting BB down IF I start taking Clonidine daily.. or 2 Atenolol a day AM/PM and only take the Clonidine as a PRN. Again.. my choice!!

He allowed ME TO MAKE MY OWN CHOICES???? WOW!! I am 60 and its amazing how wonderful these new docs have treated me. They WANT to find out what is wrong.. they want to LISTEN and ASK me what I want to do. They are agressive yet can complicate my symptoms by treating this separately. He offered to be their consultant.

He relates well.. he is aware of the cost of testing and seeing multiple docs..meds..etc..for what?

I wanted a NAME to this montster that consumes my energy and interupts my living.

Today that name was confirmed. After so many years.. you let some things go...and continue to fight for what your priorities are..

So.. yes I will have my endoscopic eval next week for GI and swallowing difficulties..and pursue narcolepsy/cataplexy sleep disorder evals..take the meds..and record how I am doing.

I took care of 3 children alone..in poverty..struggling with my health issues..then a disabled husband until he died.. now that I am alone..its just time for me.

Thanks for the support and taking the time to read this..means a lot.

Jan

The red bumps and burning make it sound more like Rosacea than just a facial flush.

Nina

Yes, I do believe this is what my sister had as well. Again, the green tea helped with this problem.

I have had facial burning for over a year which has made it painful to apply makeup anyway. But now the redness and red bumps are so visible, ..... And ANY friction brings out more bumps and redness and perpetuates the whole problem.

So, how do the rest of you POTS patients with flushing deal with applying makeup or facial cleansers?

First, what exactly are the red pumps?

My sister that gets the usual flushing also gets redness w/ bumps but it is different than flushing. She uses green tea bags to help clear this up.

Second, I flush a lot and easily. I am very senstive to makeup, soaps and most topicals.

I rarely wear make up, if I do it is only eyeliner and/or lip stuff ... but nothing on my cheeks or lids.

For soap I use Dr Bronners or something with little junk in it.

I also cannot wear jewelry for similar reasons. I cannot even wear my wedding ring.

Thanks for the reply. The hot feeling I get does not so much feel like the skin burning, just heat from the inside.

I do however get the skin burning thing at other times as well as eye burning (as if I have bleach in them).

Interesting about the benedryl. I could only tolerate it once in a while as it tend to make me restless as well as very myoclonusy. I do take it at time though for nausea and allergies. Next time I take it, I will have to see if it makes a difference with the heat problem.

I also get the mottling often. Ever get the niacin flush? Well I get a very exaggerated flush from head to toe along with the mottling all over. And it hurts like heck!

Can you tell me more about your elevation in catacholimines? What does this mean exactly?

But at night the burning makes it so I usually have to sleep with my feet out from under the covers because they are so hot and sensitive. Since then, the burning has spread to my face, and I get hot, red and burned skin there too. When my hands and feet are cold, my torso and face burns. I honestly think that this is as a result of the adrenaline my body produces due to my pooling. The adrenaline clamps down the arteries in my periphery, directing it toward my core. Then during sleep, the adrenaline subsides somewhat and my blood vessels open up again only too much, causing the red, hot burning feet and hands.

... One help for my burning feet at night is to take a benadryl. ...

Often I'll look at my palms (and the soles of my feet) and they'll be mottled with red or purple webbing and white areas in between.

Hi all.

Having mild Raynauds, I have always tended to have cold hands & feet.

I often wear socks to bed. I just posted in another thread that my hands and feet get cold when they pool.

But it is becoming very bothersome and really interfering with sleep is that my hands and feet get extremely hot during sleep. It can be very uncomfortable. I keep my room very cold because of it.

I have a fan blowing on me at the top of my bed and another fan blowing on my feet.

Sometimes I get up in the middle of the night to put ice packs on my feet.

This began five years ago after my preg with Ava.

Now at our eval with aut neuro Novak, he did say he thinks we have aut neuropathy with distal sweating issues.

Ava did not sweat at all. I am not sure what my results were on that (I see him in a couple of weeks).

But I know my hands and feet brarely sweat anymore. My feet only as a small area on the top and in between my toes that sweat.

Do you think this is the problem?

Besides being uncomfortable, is there any other significance to this?

Thanks,

I echo everything Maxine posted.

I wanted to add though, in re to finding health care professionals that are knowledgeable & not intimidated or annoyed by the informed pt, I have learned it is quite helpful to post of forums of specific conditions seeking doctor and posting a criteria of sorts.

I have found excellent doctors this.

I do have to travel quite a bit to see them and because Ava has many many health issues, we see many.

I cannot say for sure in general, but do know when I pool, my feet and hands are often cold UNLESS I am pooling when I am outside on a hot day .... during those times my feet are very hot.

During pooling, I am also more senstive to air conditioning while pooling and sometimes the cold becomes painful ... though I do have mild raynauds.

Hi,

My doctor told me that I have blood pooling in my legs and abdomen, since my MSNA showed no increse when tilted. But I have always thought that people who have blood pooling can actually see it - red or purple feet / legs, or blotchy, or warm with swelling etc. But I dont have this - my feet are ALWAYS cold! Doesnt this sound like the opposite?

Thanks.

If you are allergic to compazine, I'd be VERY careful of other anitemetics as many similar to compazine.

Zofran though is one that is quite different though from the rest.

Personally I have not found it helps w/ my nausea and vomiting much but others have found it does help.

The other good thing about Zofran is it is not a dopamine antagonist like most of the others.

Have you been tested for gastroparesis?

Thanks for the suggestions. I'm leary of anti-nausea drugs since I'm deathly allergic to compazine and probably would be scared to try another one.

I did talk to my GI and he suggested the Carafate suspension. Gross. Seems to think that it will calm the reflux which may be adding to all of my other symptoms.

He wants me to get an endoscopy and colonoscopy but now I have to get clearance from the cardio (which one, cardio #1 or number 2????) since my b/p goes all over the place.

This is so frustrating.

The dry heaves are the worst.

Thanks, Michelle, but the thought of a banana right now would just eat at my heartburn!

I'll forgo the fish oil tonight.

Do you find that stress also adds to this?

I just want to eat like a normal person.

Rene

Excellent!

Which brace did you get?

Since getting diagnosed with cranial-cervical instability, I've been put in a hard neck brace to wear 70-80 percent of the time, cutting back a little as long as I can maintain "neutral" posture. I was skeptical, but it really helps all kinds of stuff--nausea, vertigo, blurry vision, tongue tingling, and headaches. So many symptoms that now I see were literally from my unstable neck/head. I've aborted all of these symptoms within minutes of putting the brace on, and a lot of them come back soon after I take it off. I'm trying to learn to hold my head properly, but never realized how far back your head has to be, and how "up in the air" my nose and chin are s'posed to be. Flexion brings on all kinds of disparate symptoms. Not that I want cci, but it's amazing that after multiple years, no one picked up on this!

Hi Waterbaby. I am very interested in your post.

Can you please tell me more about your mito symptoms?

In general I think dysautonomia is probably always secondary to something else.

In our case, it may be Ehlers Danlos ... but it also may be mito disorder ... or both.

I will be bringing my daughter to see a mito specialist soon. Both our epi neuro and aut neuro suggested this.

My daughter will likly go on the mito cocktail. (supps)

One of my daughters most concerning symptoms is she has awful cycles of nausea and vomiting.

Every three weeks or so she has a day or two of N&V ... but the more concerning part of the cycle is she desats (her o2 drops while sleeping) a lot the night before her vomiting begins.

There is a long list of autonomic sysmtoms that occur with these cycles.

We have not been able to firgure out completely whether or not these episodes are autonomic without seizure ... or if it is all autnomic seizure.

Anyway, I'd love to hear about more of your mito issues and what has helped.

Thanks Jana. I have figured a sleep study is in the cards ... still, I am wondering what is exactly occuring when this happens.

The breath thing ... I can see how that might be CSA (central sleep apnea) but I curious as to why dozing of would trigger as opposed to other periods of sleep. And of course wondering what is the deal with the saliva surges in throat.

So when is your sleep study Jana?

Hi Jen,

Just my opinion, but I've had things like that, and my PCP has finally talked my into a sleep apnea study. I know there are several of us here that suffer from it. But I think you need to talk to your PCP about, one way or another. How scary~ Hope you figure it out soon!

Cheers,

Jana

Seems as though many of us have these unusual symptoms.

I am wondering if anyone has these.

First, lately when I fall asleep I get a sensation of a surge of saliva secreting in my lower throat. I wake up choking. It only occurs as I am dozing off.

Similarly, at times as I am dozing off, I get a sensation of not being able to breath and wake up gasping. I do not snore (that I know of).

In terms of the secretions, this can occur with autonomic seizures, and in general seizures can be triggered by that period of falling asleep. Would anyone happen to know if this type of thing could be autonomic activation w/o actual seizure activity? Is it a normal thing ... or another autonomic quirk?

Thanks,

Jen

I was surprised when I heard that Dr. Bolognese suggested inversion for cranial settling and I think for sub optimal CSF flow.

I have been doing it for years for my back and it does help quite a bit.

BUT for anyone reading this ... scratch what i said about inversion if you have EDS.

I just read about Nazli McDonnell warning of TTT and risk of coding for EDSers. YIKES!

I guess inversion would be contraindicated. Ya know, I am surprised Dr B did not think of this.

Sorry for the not so good advice.

Hanging upside down would probably kill me---seriously it probably would. Bending over makes my head feel like it's going to burst. If one has anything remotely close to an aneuysm I can't imagine a doctor telling them to hang upside down.

I have been to the CI----(TCI). I don't have plans to go back. I'm currently seeing an orthopedic surgeon my EDS geneticist recommended, and I'm trying to find a neurosurgeon to evaluate me further. My PCP is trying to help me, but you would believe how few NSGs know anything about instability of the cervical/cranial area related to EDS.

Maxine :0)

mkoven,

Yes please do keep an eye on your enlarged aorta.

My aorta so far is fine, but I have a bulbous vessel in the back of my neck ... probably the beginning stages of an aneurysm.

The only thing we can do is keep an eye on things and possibly at some point surgery. Will do an annual MRI.

From what I understand aneurysms take quite a while to grow.

Maxine,

I also have quite a bit of pooling and cannot do much walking on flat surfaces. Funny, I am having this same conversation today with a friend of mine.

So on level ground I have a rough time ... lots of pooling in swelling and hands & feet however, I can hike up mountains with little problems.

For exercise, I either hike or use my recumbent bike. I think the recumbent bike s also recommend by aut specialists.

Have you been seen by the chiari institute? Eventually I plan to see them, but wanted to mention another woman I know that has the cervical instability, EDS, ruptured aneurysm (and all of it's awful effects) went to the CI and she did not want to do any surgery so they suggested inversion (as in hanging upside down).

I do this too ... it is so helpful and relieving.

I have a terrible time sleeping. My sleep is quite fragmented because I have to continuously shift positions.

Laying on my sides causes numbness in my arms from my shoulders to my hands. On my stomach ... I get a pinching sensation in my neck (I suspect from my tortuous cartoids), my back ... forget it! I get tons of nausea and congestion in my neck & head if I fall asleep on my back. I do need to lay on my back some to relieve my shoulders ... I just have to be sure I do not fall asleep like that.

One pillow that I found helped some was a side layers down pillow.

Eventually I want to get this chiari pillow.

Here is a link:

http://www.chiaripillow.com/

Two questions-

-where does one get cine mri's done?

--to Maxine, and anyone else with cranial instability, I've noticed I have trouble lying on my side--it seems to push my head over, make me dizzy and give me a headache. How do you sleep? (Back? side? what type of pillow(s)?)

"The other thing she suggested was to get myself checked for epilepsy, since there's a type of seizure called 'atonic' that causes these symptoms and that people will pass out or come close to it."

Did your doctor really tell you this about atonics??????

An atonic seizure simply means without tone ... you will suddenly lose muscle tone and drop. They are also called drop seizure.

The person rarely ever "passes out" or comes close.

And as far as I know brain zaps are NOT part of this type of seizure.

Here is a link to a description of the atonic:

http://www.epilepsy.com/EPILEPSY/seizure_atonic

I have been taking melatonin for years. It works better than any sleep med I have taken with fewer side effects.

I also have circadian rhythm disorder.

I do think though that melatonin does worsen my dys symptoms and I have been trying to get off of it.

For the circadian rhythem issues, I find light therapy to be very helpful.

While brain zaps are typically a withdrawal thing, I have heard of folks having zaps while Paxil. A friend of mine had this while o n Paxil.

I would wonder if it is still a withdrawal thing even if you are not coming off. Do you notice the zaps coming at a certain time? Have you skipped any doses? If no, I wonder if changing the dosing around could help.

If you are taking twice a day, I wonder if dividing the doses and taking three or even four times a day might help.

Suzy and jjb,

I haven't changed any meds, so I don't think that's it. Thanks, though, for responding with good info.

Cheers,

Jana

It is somewhat common when coming off certain meds.

Hello,

I need to know if anybody else has ever had problems with having something that feels like an electrical current hit in the front on your brain and then have it travel to the back. It makes my whole body feel strange, and I feel kind of 'out of body' and like I could just drop and pass out. I've had these for 5 days in a row now, and they're getting worse. Please, if you've had something similar or might know something, please share it. I can't get into my neuro for 2 months...

Thanks, all!

Jana

Maxine,

Here are two articles that may be able to help you and your PCP to understand the connections bewtween, chiari, EDS and cranial instability.

The first article is a paper written by Nazli McDonnel, Clair Francomano (two of the worlds leading EDS authorities) and then several NSG from the chiari institute.

The second article is a translation from the first article.

SO here you go:

Syndrome of occipitoatlantoaxial hypermobility, cranial settling, and Chiari malformation Type I in patients with hereditary disorders of connective tissue

Translation

My problem is more cranial instability issues then the chiari, as I only have 1mm herniation. However, I have a small posterior fossa, the instability, a missing left vertebral artery, and an enlarged right vertebral artery making up for the one missing on the left. The right vertebral artery is also being kinked from the instability. ..... They don't understand the EDS/instability connection. I have a lot of subluxating in the cervical spine/cranial area----several times a day. My PCP doesn't want me walking around like this. He has seen the instability.

Personally, I have decided to avoid TCI.

Wishing you the best Mkoven.

Maxine :0)