jjb

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 :

Autonomic simple partial seizures11

* Abdominal sensation phenomena

o These are common in mesial temporal epilepsy but can arise from the operculum and occipital region.

o Symptoms include nausea, pain, hunger, warmth, and "epigastric rising" sensations, and may be associated with piloerection (ie, gooseflesh).

* Cardiovascular sensations12

o The most common cardiac manifestation of any seizure is sinus tachycardia with arrhythmias, with bradycardia occurring infrequently.

o Some patients have chest pain or a sensation of palpitation that mimics cardiac disease.

o Respiratory inhibition has been reported with electrical stimulation of the temporal regions.13

* Pupillary symptoms - Miosis, mydriasis, hippus, and unilateral pupillary dilatation

* Urogenital symptoms

o Seizures from the superior portion of the posterior central gyrus can result in genital sensations, while sexual auras arise more from the limbic or temporal regions.

o Ictal orgasms have been reported, although rarely, in association with seizures arising from various cerebral locations.14

* Other autonomic symptoms - Rarely perspiration, lacrimation, ictal enuresis, or flushing

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

Hello all!

I do wish I could afford and had room for a recumbent bike, but I'll have to make do without. ...

But...she's concerned I have Ehlers-Danlos. I'd never heard much about it. When I read about it online last night, it can be somewhat mild to severe up to 'bursting aortas, etc.' ....

Anyone know how much having EDS would 'change my life?' How will I be tested? I'm so tired of having new things wrong with me.

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

I have this from time to time. Usually not too extreme, haven't vomited or anything. Kind of goes along with a mild dizziness feeling for me. For me it tends to be mild enough that I can ignore it, though it is uncomfortable.

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:

"The findings from this report indicate that most of the children with neurodevelopmental conditions who died had multiple neurodevelopmental diagnoses and/or comorbid pulmonary conditions. Health-care providers should be aware of the potential for severe influenza illness, including death, in these children."

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.

Hello everyone,

I am new to this site and would like to share with everyone my wife's story. We could really use help / advise from anyone who is in a similar situation or has similar symptoms...

A little over two years ago (August of 2007) my wife Kristen (who was 24 at the time) began experiencing a whole series of thyroid-like symptoms. She is a special education teacher who absolutely LOVES her job and first began to notice difficulty concentrating, focusing and planning her lessons. This soon progressed to unexplained weight loss, terrible night sweats, rapid heart beat, and hair loss. She was seen three times by doctors at a walk in clinic and each time she was tested for a thyroid condition and told that she was within the normal range. After the third visit, she was told that her symptoms were due to stress and anxiety and she was prescribed Zoloft for depression (which she never took). By about late October or early November, her symptoms more or less went away on their own and she felt back to her normal self. Kristen remained healthy until the following July when her thyroid-like symptoms began to return. Again, the first signs of trouble were difficulty with concentration and with focusing, soon followed by night sweats, hair loss, rapid heart beat and some minor difficulties with language (aka looking at a picture and calling the object by the wrong name). Kristen was again tested for a thyroid condition and again she was told that everything was fine. This is when things started to get really weird...

Beginning in late August, Kristen began "having episodes" in which it seemed as if she would pass out. The very first time she had been at the beach all day and after eating dinner she got really dizzy. She told me that she felt like she was going to pass out and as I walked her towards a chair, she went out in my arms. I brought her to the chair and within about 2 minutes she had come around. As this was the first time this had ever happened and we had been out in the sun all day, we chalked it up to dehydration and tried not to get too concerned. However, following this episode, Kristen began to become really tired and lethargic. Within 3 days, she had passed out again and we went to the ER. She was not admitted and was told to stay hydrated and take it slow for a couple of days before returning to work. Over the next few days Kristen took it very easy at home but continued to pass out. However, things began to change. First, she began to loose her warning signs (no longer always felt dizzy....although sometimes she would) and also no longer needed to be standing up. Sometimes she would be sitting or lying down (having not changed position for a long time) and would simply go out. During all of these initial instances, she would generally wake up on her own within a couple of minutes. She also began to develop a really terrible headache that would change in intensity but would not go away. After a few days of this, we brought her back to the hospital and she was admitted.

Kristen underwent all the usual tests and they told her that everything was normal. She had EEGs, EKGs, a series of MRIs (with and without contrast), an abundance of blood work to check for infections, anemia, etc. and everything was fine. During this time, her headaches got worse and she continued to "have episodes" without any warning. She eventually had a tilt table test and was told that she had vasovagal syncopee. She was put on pindolol (a beta blocker....not sure if I spelt that correctly), was told to stay very hydrated and was sent home, being told that she could return to work in 3 days. Once home, she continued to get worse....having more and more "episodes" in any position and without any warning signs what-so-ever despite the pindolol and despite staying very VERY hydrated. Her headache also continued to get worse and her night sweats became unbelievably bad (she started sleeping in a sleeping bag on top of the bed so that we didn't need to wash the soaked sheets every day). After 3 or 4 days we brought her back to the hospital and she was again admitted. While in the hospital she continued to have episodes without any warning, she also developed some twitches (mostly in her right leg...both while awake, while asleep, and while having episodes) and her headache continued to get worse....to the point that they ordered another MRI (which showed nothing expect a pineal cyst which they felt was unrelated and was not a big deal...but was worth monitoring and put her on every imaginable pain med from oxycodon, to morphine, to dylauted, all without success. During this time, her episodes continued and she began to twitch more and more while out, her eyes began to open and close, and she would occasionally make little squeaking noises. It also began to become more and more difficult to arouse (they began to do sternal rubs, etc.). She had another 2 EEGs (with video....because they began to suspect seizures), another series of long term EKGs (which showed a partial mitral valve prolapse), and some additional orthostatic testing and another tilt-table test. This time, she was told that she had POTS and was again sent home. They discontinued her pindolol and started her on Mitodrine (5mg x3), and Pyridostygmine (60mg x3). Once home (she was released on Oct 1) things continued to go down hill despite the meds. Some days she would have upwards of 20 episodes. She would also have the same symptoms while sleeping at night. She went to another neurologist, cardiologist, infectious disease specialist and for more testing at an outpatient autonomic center in Boston (where she had yet another tilt table test) and they confirmed the POTS diagnosis, and adjusted her dosage to 5mg x4. She continued to suffer episode until early November when things began to improve gradually and by the end of November she was nearly good as new. By mid December she was able to return to work and was virtually symptom free. For the next 7 months she went about her daily life, working, going to the gym, etc. and feeling pretty much normal. However, this past July, it started again!

First, the inability to concentrate, then the dizzyness, then the passing out....first with warning and following a change of position, followed by a quick recovery on her own. This again progressed to passing out without warning and the return of the seizure-like activity while out and while asleep at night. The headache is back with a vengence as is the hair loss and to a lesser extent, the night sweats. Also the twitching has gotten much worse (now her neck and legs) and it is happening more and more and without her knowledge. She is currently hospitalized for the third time this year (we have now gone to the Boston hospitals for the past two admissions....best in the world right?) and they are just as puzzled as everywhere else. She has had more EEGs (on one they said slightly irregular....looks really tired and on the other they said some epileptic activity but when they look at her episodes on the video, they don't match up with the unusual activity!), more EKGs, a PET scan, a spinal tap, and more MRIs which have shown that the cyst on her pineal has changed shape but has not significantly increased in size and the doctors cannot seem to agree with each other about whether or not this may be a problem. It is not impeeding the flow of her cerebral spinal fluid, but they still talk about possibly draining it (grasping at straws I think). She is also scheduled for a sleep study, but that will not be as an inpatient, but the doctors don't seem overly optimistic.

Kristen has also been on two 30 day cardiac event monitors (which always show no problems during her episodes). Also, during her second hospitalization of August 2009, she was finally diagnosed with Hashimoto's thyroiditis (an autoimmune disorder causing hypothyroidism). She has been started on Levothyroxine for that....so far without any improvement but we were told that it may take 6-8 weeks. The one piece of good news is that the mitral valve prolapse appears to be getting better. She has recently been started on an anti-seizure med (Kepra....7.5mg x2)....just in case they are seizures....no real improvement yet, and she has also been put on Fludrocortisone and had the pytidostygmine discontinued.

It is just sooooooo much to digest. It seems as though every time we go to the hospital she has developed a new problem but nothing has gotten better. She was perfectly healthy until three summers ago and now she has so many problems which they cannot find a link between, however they always all show up (and disappear) together. However, each time that they come back they seem to be worse than the time before and with new symptoms added as well. Does anyone out there have a similar story. We have tried to think of any possible exposures, etc. that could have caused these problems but we cannot come up with anything. Why the seasonal component? I know that POTS can be made worse by the heat and humidity, but all this? Kristen is not a complainer and has remained remarkable up beat through most of this. However, these past few days she has mentioned that she feels like she "is slowly dying" and I am starting to worry that they might never figure it out. I am relatively confident that her symptoms will likely disappear again, even if they do not figure things out, but now we just figure they will come back again next July / August (probably worse than this time) if we don't have any answers. Any thoughts / help / similar stories would be much MUCH appreciated.

Thanks

Kristen's concerned husband.

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.

A friend of mine self-medicates with cannabis for pain and nausea management. As my bowel dysmotility is probably my worst symptom of them all, she has suggested that when I get it really bad I should take a tiny bit of cannabis and it will help my nausea and pain and get my gut moving.

Obviously I can see the potential pitfalls with POTS and drugs (I've never, ever taken any drugs before) but my symptoms are so bad sometimes I would consider this.

Anyone tried it? Anyone have any idea what it would do to someone with autonomic problems?

Janey

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.

Went to the Cleveland Clinic, and the neurologist spent about an hour with me.

Maxine :0)

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.

Autoimmune conditions are treated by rheumatologists not immunologists. Immunologists usually treat allergies and immune deficiency states (but not HIV/AIDS).

Flop

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.

I have bad discs and can trace much of the nerve pain to specific discs. Big toe is L4-L5, top of foot, outside of shin-- I get that too. Other toes, sole, and ball of foot are L5-S1. Mine is usually triggered by too much sitting, bending, and other spinally risky activities.

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

sounds like neurological pain--the shock like pain is very typical of neuro pain. I get it in my fingers and toes, sometimes also in my biceps and triceps

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.

For those of you with head-neck pain issues, what kind of pillow do you sleep with? As I posted elsewhere, I've been diagnosed with cranial-cervical instability, and the base of my skull/top of my neck is extremely sensitive. I need support but not pressure. I can't count the number of pillows I"ve tried (I'm a back sleeper)--usually either too much pressure or not enough support. I still feel a big crack at the base of my skull along with a headache when I move in the morning--meaning I guess that whatever I'm doing isn't quite enough? I currently use a contoured memory foam pillow, but wonder if there's something better.

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.

So I tried the "simple pilates" regime I've been put on, just ten repetitions of each movement/position, and it was ****! I know, just ten, you think "that should be easy!" but it just wasn't. By the end of it I was shaking, nauseous, dizzy, had a headache and my intestines had started cramping. It's been a long time since I exercised but I didn't realise lifting my leg up 10 times in a row would give me a full-blown POTS attack. It's put me off doing it again because I don't want to feel like this every day, especially if it takes me about two hours to recover. Have any of you done Pilates and found it has helped with symptoms? If I keep doing it, will it get better?

Janey

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.

Yes, I too have this. Medications that I could easily take prior to dysautonomia, I can no longer tolerate. I get the same effects as you! Racing heart, sleeplessness, restlessness, anxiety and a general feeling of being sick.

I used to take zoloft 50mg no problem. I think I need it again but have tried with tiny doses and still feel like i'm going to jump out of my skin. I take klonopin and have for years, but now I find it to be stimulating instead of calming. It's all so frustrating. And I was always able to take Augmentin for an infection but the last time I tried, I got all of these awful mouth sores.

I wish someone could explain why we get such side effects. Even benadryl which is supposed to be sedating, now wires me so badly I feel like jumping out of my skin

I'm hoping someone can shed some light on this puzzle.

Rene

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,"

hello

I went to the endocrinologist today, who oby the way knew nothing about pots....I reallu feel that my weiird glucose levels might be realted to something else...

any thoughts?

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.

I now have an aspen vista, which is padded, adjustable, and pretty comfortable. I had a Thomson collar before, which was quite uncomfortable, but also effective. The nsg said no traction, as he feared it would stretch out my ligaments further. The first nsg was also opposed. So I'm just trying to be meticulous about posture (head over shoulders, chest out, shoulders down, move arms from shoulder blades), and if that's not enough, on goes the brace. It does help.

I now have another pt rx for my neck to work more on posture and stabilization. Just have to find a pt who won't stretch me.

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?

I take tigan with no side effects. It's not very strong, though-- but I like how well I tolerate it. I try to make sure that I always have a dose in my purse just in case. REglan and compazine work for me, but they put me in a foul mood, as they suppress dopamine. I have to remind myself when I'm on them that my state of mind will pass when the drug wears off. Sometimes those seasick acupressure wristbands work for me. recently, I've posted that a lot of my nausea seems triggered by my unstable neck/head. since wearing my neck brace more and being careful with neck posture, I've dramatically reduced how often I need nausea meds. My period also seems to bring on nausea.

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.

Nausea is my main and most persistent symptom. Anti-nausea medication really depends on what type of nausea you have. If it occurs after eating a meal as part of gastroparesis, then you want something like metoclopramide or domperidone to increase peristalsis and help it go down. If it occurs randomly as a POTS/dizziness symptom, then I find something like compazine or phenergren really helps. I get no side effects from any of the nausea medications, but some don't work. For eg, metoclopramide only works 40% of the time for me, but compazine works every time.

Janey

Nausea is my main and most persistent symptom. Anti-nausea medication really depends on what type of nausea you have. If it occurs after eating a meal as part of gastroparesis, then you want something like metoclopramide or domperidone to increase peristalsis and help it go down. If it occurs randomly as a POTS/dizziness symptom, then I find something like compazine or phenergren really helps. I get no side effects from any of the nausea medications, but some don't work. For eg, metoclopramide only works 40% of the time for me, but compazine works every time.

Janey