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Boy oh boy ... we have tons of experience with this issue! When it comes to epilepsy and dysautonomia I can easily see how one could be mistaken for the other. Seizures can cause autonomic symptoms and autonomic symptoms can cause seizures. Ava has true epilepsy and her seizures always cause autonomic symptoms and there is an actual seizure type called an autonomic seizure (there is also an epilepsy syndrome called Panayiotoplous syndrome which is a syndrome of aut seizures). Autonomic seizures can cause all of the same symptoms we deal with the dysautonomia (nausea, vomiting, tachycardia, bradycardia, flushing, pallor and so on ...). Last spring we saw a neurologist that specializes in autonomic disorders he explained a lot of this to us. Our problem is we don't fully know what symptoms belong to what disorders and we are now dealing with abdominal migraines to make things even more confusing. When my dysautonomia was at it's all time worse 10 years ago, it triggered seizures (most epilepsy specialists with tell you the other way around occurs). If you truly have dysautonomia ... I would be sure to continue with the treatment. As far as Xanax goes, benzodiazepines can be helpful in treating seizures, it is the withdrawal that can trigger seizures. We are actually considering klonopin nightly for Ava as it we know it will help with ab migraines, autonomic issues and seizures. What we are doing is seeking out treatments that are known to help with all three disorders. Anyway, it is very possible you have both conditions ... many folks do. If that is the case, I would also wonder about an underlying disorder typing the two together such as mitochondrial disease. Here is some info on autonomic seizures, from this link http://emedicine.medscape.com/article/1184384-overview :

Hi all. I brought Ava to see a mito specialist last week who said it sounds as though we both could have mito disease. We also have EDS. I had mentioned to her that a cocktail of supps similar to the mito cocktail is also used for EDS and we started talking about a possible relationship between the two conditions. In the past I know I have read EDS effects the mitochondria, but now I cannot find any info. Does anyone have any info connecting the two? Does anyone here have both mito disease and EDS? Thanks

Hi Cat Lady. We were Dxd with EDS a few years ago. It did not change my life mcuh but it provided many answers. If you have EDS, it could quite possibly be why you have aut issues (that and there would also be a great chance of chirai which can also cause aut issues) I bought a recumbant bike a couple of years aga and it is great! Any exercise where I pust with my legs seems to be very helpful for over all health with me. I also was recently given and older total gym. This is even better than the bike as I can work numerous muscle groups without overdoing it (have to be careful with EDS & joints) You can often find those total gyms used at little cost. Good luck, Jen

Hi all. Ava saw her neurologist this past Monday. She is happy with Ava's over health and development, but we are still trying to sort out what is what in terms of her paroxysmal symptoms of desatting, nausea & vomiting. We had seen aut neuro in Mass that DXd Ava with Aut Neuropathy and though Ava's monthly symptoms are and aut thing and her prolonged episodes of paralysis (which occur about twice a year) might be episodes of parasomnia. Ava's regular ped neuro believes the prolonged episodes are seizure and the monthly paroxysmal episodes may be migraine variants and/or possibly seizure. She mentioned possibly seeing another aut specialist, but we are seeing a mito neuro in a few weeks so I would rather wait before deciding on seeing another specialist. I would though like to get your input on good specialist to take children too that really understands dysautonmia and the odd health health quirks some of have. Does Dr Grubb see children? Thanks, jen

Hi there. I am very sorry your daughter is going through so much. We also have the aut neuropathy dx as well as EDS. I have dealt with the sympoms you describe all my life but wanted to mention for m I have learned to manage by avoiding my known triggers. My daughters issues are more complex though. She had a stroke, has epilepsy and of course the dysautonomia and EDS> She also has all of the issues you described and we are still going through testing, our next next doc will be with a mito specialist. I wanted to mention to you that when it comes to DXing chiari in an EDS pt, it is important to go to someone that understands the relationship between chiari and EDS. When doing an MRI on an EDS pt, the the MRI should be an fMRI and the pt should be upright, NOT laying back. Since chiari can cause or worsen dysautonomi, I would strongly urge you to seek out one of the more reputable geneticists (such as Nazli McDonnel or Clair franomano) as they might suggest the MRI to be redone. Hope this helps, Jen

Yeah I get it with the dizziness too ... and after BMs, certain meals and so on.

How brief are your episodes & how many per day?

Yes, the vaccine injury compensation has been around for quite a while. A cousin of mine got polio from the shot and the gov paid for his medical care ... this was back in the 70s. And yes, as the above poster mentioned, there are scare tactics ... but I'd like to add the scare tactics are coming from both sides. I have not looked at the database of all US deaths but here is a link to the deaths of children in the US (associated w/ H1N1). :http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5834a1.htm Here are some bits from the article: Ava has multiple health issues, EDS, dys, epilepsy, cerebral palsy (stroke), sleep apnea. You might think it'd be safer for Ava to get the shot, but in her case the shot at this point would be riskier. She had a unusual reaction to the regular flu shot a couple of years ago that caused seizures (not febrile) and motor regression. It was a neurologist at Boston Children's that advised us against ANY further vaccines for now. It is good to be informed & when weighing out the risk/benefit ratio it is important to look at the individual (IMHO)

Does anyone ever have days where they have multiple but brief episodes of nausea?

Hi Kristens husband. We have been going dealing with the more unusual seizure types, dysautonomia and possible parasomnia such as cataplexy. I can understand your frusteration. My daughter sees an epilepsy specialist at MGH and I see a neuro in Worcester. My neuro suggested me having aut testing by Peter Novak in Worcester. Novak also has an interest in movement disorders. I did and so did my daughter. He has other cases where pts have similar issues and it is sometimes difficult to know what is what. I have had most of what you describe as Kristens symptoms when my dysautonomia was at it's worse. I understand Kristen has had EEGs, but has she had a prolonged eeg? Like two days to a week of continuous monitoring? You mentioned she had abnormalities, but not at the times of the episode, I would wonder a couple of things. Either the episode being part of dysautonomia and it triggering epileptic abnormalitites or the other way around. Both can happen and both have happened to me and still happens to my daughter. Another thing to consider is that some epileptic/epileptiform activity can be too deep for the typical electrodes to pick up. Anyway, I hope you can figure things out soon.

Do you live in one of the states where you could at least het Dr approval? several years back I had aked my PCP about this and she was supportive and even told me about safer methods of trying. Unfortunatley the side effects from it were too much for me. There are plenty of papers out there re it being a good antiemetic, but I have not heard of it helping w/ motility issues.

Hey Maxine. Glad to hear you have a neuro that is taking your issues seriously. We seem to have many of the same issues ... guess EDS does that. I will be interested to hear how your carotid u/s goes. I had one last year. Both rt & left are abnormal. Thin & tortuous. They'll need to be followed. I have another in a few weeks to see if anything has changed. I get similar headaches. I tend to think mine have a lot to do with my posture from low tone & hypermobile joints (I also believe my bulbous vessel comes from that too). anyway, I have been working on trying to strengthen my back, neck & shoulders. Hoping it works.

Hey Dustin. Sorry you are experiencing what you are. I had much of what described several years back when my autonomic symptoms were at their worse. In my case it was a combo of dysautonomia and probably simple partial seizures (sudden emotional changes) as well as med side effects. Here is a link to a good simple description of the simple partial seizure: http://www.epilepsy.com/EPILEPSY/seizure_simplepartial You can see that beside unusual motor movement, the simple partial can cause sudden emotional changes as well as autonomic changes. Incidentally, a book I have on autonomic disorders by the AAN, states that it can be very difficult to differentiate between a simple partial seizure and abnormal auotnomic activation w/o seizure. Anyway, the motor issues (tremors/shakiness etc) for me were not seizures, but more so I think med side effects. Some meds that can cause these types of side effects are dopa antagonistic antihistamines & antiemetics (meds used for nausea and vomiting). SO meds like benedryl, compazine, phenergan, reglan etc. Reglan for me was the worst! Not only did it cause movement problems, but also caused extreme restlessness and anxiety. Benzodiazepines (xanax & valium etc) even though a different type of med can also cause some similar symptoms in some. Also, benzo withdrawl can trigger seizures. Some become very sensitive to coming down from benzos Anyway, I hope you figure it out soon & and find some relief.

Thankfully things are beginning to shift and other specialists and sub-specialists are becoming interested in immune and autoimmune quriks. At least w/ peds. For example, some neurologists and and gastroenterologists that have an interest in autism have began looking for/at and treating these quirky immune or autoimmune issues.

I have been wondering about spinal issues. I have had a pinching sensation I think partway down my spine for the past several months. Last year after having had a chest ct scan, it showed some spinal lesions. I have not followed up to see exactly what they are yet ... but I have been wondering if it is relevant to these odd pains.

What is the cause exactly of your shock-like pain?

Hi all. For the past month or so, I have been getting these unusual shock like pain. Most commonly occurs in toes on the left foot but sometimes in my foot itself. Comes out of the blue ... don't see a trigger. The pain is intense but only lasts a couple for seconds. Does this sound relevant to neuropathy or aut related? Thanks, Jen

Yes. I have strange odors that come and go. The smells are of a metallic, burnt and amonia type smells. They are all in my sweat. The metallic smell is only in my hands when they sweat. The burnt and amonia smell are when my torso sweats. The burnt and metallic smells began around the same time and was when my dysautonomia was at it's worse. My daughter also gets the metallic and burnt smells. Her smells usually occur around the time of seizures. They are REAL smells and it is me that smells them on her NOT her smelling them as an aura. Her burnt smell is on her head, one of the few places she sweats. Her metallic smell is usually her breath.

I have the same problems and it is getting worse. Have you seen the chiari pillow? I plan on ordering one soon. here is a link: http://www.medpillow.com/Merchant2/merchan...tegory_Code=MSP I also plan on elevating the foot of my bed, though I wonder if that will cause more pooling.

Pilates can be very hard! I keep saying I am going start doing this again as I think it will help my overall health. Yes, do go slow.

The sensitivity to the benydryl sounds like it could be a dopamine problem. It like many antihistamines and antiementics (work in a similar manner) are dopamine antogonists and can cause all sorts of symptoms. Often they can cause restlessness (inclduing restless leg syndrome), anxiety, insomnia etc. Typically I am med sensitive too, but when my dysautonomia was at it's worse, I was very senstive to the dopamine antags. At the time, I was also sensitive to Zoloft. As well has terrible effects from benzos (such as klomopin). I would guess you may have med induced RLS or something similar ... I do think these can occur with the dysautonomias. In a book I have on RLS, there is a chapter that talks about med induced RLS. They recommend these folks avoid dopa antoags and when it comes to antidepressants, they suggest the stimulant meds such as wellbutron .... many would not consider this is thye have anxiety and/or insomnia assuming it will worsen, but sometimes this stimulant med can actually help with both as it helps with dopamine instead of blocking it. About the antibiotics ... again, I am sensitive too. I would wonder if your mouth sores are yeast overgrowth. These days many docs suggest a good probiotic to help prevent this type of thing.

I have had elevated sugar numerous times. I think in general, there is glucose intolerance in my family and if we are not careful we will end up w/ diabetes. Do you know if you have aut neuropathy ... or small fiber neuropathy? I think glucose intolerance in general can ocuur with this. The Aut Lab we went to says "Early detection of small-fiber neuropathy leads to early screening for diabetes or glucose intolerance, and early lifestyle or pharmacological interventions,"

Thanks. I will look into that brace. I have not done ct, but I crave it! RE: PT, do you have that article written by a PT on physical therapy in the EDSer? I had to give a copy to Ava's therapists. Several of them tended to over stretch her ... they never understood what they were doing could be harmful.

Interesting about the nausea being triggered by your neck instability. I have the same. I have often tried to describe this. Only Nazli McD understood. I also sometimes get sloshy noise in the back of my neck. Can you post a link to the neck brace you use? Have you ever tried one of those cervical traction devices? Do you get this too?

A person needs to be VERY careful with metoclopramide (Reglan). The side effects an be terrible. More so than many meds. Has a black box warning. Can cause movement disorders as well as severe anxiety/depression. The onset can be sudden. I was on IV reglan for a month and became very sick from it. It made me very myoclonusy, severely sleep deprived and restless. As well it caused episodes that were likely seizures. If you need a drug for motility issues, Domperidone has fewer side effects and IMO works better than reglan. other antiemetics such as benedryl, phenergan and compazine, a person also needs to be cautious of if they are vulnerable to movement issues such as periodic limb movements, restless leg, anxiety etc.They are similar to Reglan in that they are dopamine antogonists, but their side effects I don't think are as bad. I can tolerate benedryl for nausea once in a while, and do take it, but if I take it too frequently, I get insomnia, myoclonus and very irritable. If my nausea is mild I drink chamomile w/ lavender tea, or mint tea. Ginger root is helpful for some. For me though, I really just need to avoid my known triggers, which there are many.