Zap

One of the things that I believe kept me going amidst stress and give me energy in spite of my horrible morning intolerance was green smoothies. Like many other things, I need to get back into this habit. After I crashed from all the migraines, I gave up on a number of things that were making my life better, because I didn't have the energy to do much of anything for a while. I'm starting to get back on the up-swing a bit, and I can actually enjoy the foods I used to love without all the fear that I'm causing all the symptoms. One of the things our herbal business makes is a SuperFood Green Powder (all organic and has spirulina, wheatgrass, barleygrass, etc.) There is a grass-free, allergy friendly formula too. It has gotten some awesome reviews, aside from our own experiences with it, and it definitely boosts energy. The best I have felt in many years was during the period where I was eating large amounts of fresh greens and having smoothies for breakfast. A healthy diet had kept my migraines (that I had often enough in my teens/early 20's) almost completely non-existent. I was still eating well when chronic job/life stress started to interfere with my sleeping and brought the migraines out of hibernation, to become chronic daily migraine. As this progressed, I began to get lax with what was a very healthy diet, and I'm sure it didn't help things. I definitely noticed the fatigue creeping up on me more as the smoothies, and the greens fell out of their prevalent use. One of my favorite smoothies was a scoop (2T) of the SuperFood, frozen organic mango, preferably fresh pineapple, and a little juice to make it drinkable without being too thick. The pineapple and its bromelain (as well as the other fiber, nutrients, etc.) helped my stubborn digestive system quite a bit. I used to snack on fresh pineapple quite often, too. As I've been reintroducing favorites from before the storm, I definitely am remembering why I loved them so much. These foods definitely have anti-inflammatory properties and are very nutritionally dense. If I have an underlying inflammation problem, my love of herbs and spices and vegetables definitely has helped mask it somewhat. If there is a nutritional deficiency at work, or a mitochondrial problem, likewise my habits certainly have had a positive effect on energy, as well as attitude. When all other things seem out of my hands at times, this is something *I* can control, that does have a beneficial effect on my life. In some ways, I do wonder if these issues were creeping along in the background for a while, if I had put them into submission with my lifestyle choices, and if the massive amount of stress from my mess of a life as a whole brought me crashing down and brought out all the symptoms with a vengeance. This much I do know - I have seen the marked effects that a positive diet can bring to a bad situation. Greens, smoothies, and juicing come highly recommended.

Many thanks to all of you for the replies! firewatcher - Mornings are my sworn enemy, especially since they were when probably 80% of my migraines were happening. My symptoms were ALWAYS worst in the morning, and eating always made them worse, probably because of the blood pooling in the abdomen after eating. Ginger - WOW! Part of me feels that I could almost be in your story, being sent to Mayo to prove I'm nuts only to come back with the experts validating me. I've had a few melt-downs, and I think part of that is why I've even had any dysautonomia testing at all. Sadly, I think that I'm either trying to downplay my symptoms subconsciously or they aren't being taken for as severe as they are, and I may yet travel to Mayo. I still think there are one or more things hiding yet. We've made some progress, but I know things could be better. Cfmartin - See, I wasn't even dx'd with tachycardia - that is where I'm a bit confused. Maybe I was just having a really good moment during the TTT, but at the time my one leg went numb and I was having some symptoms, however my test listed me as asymptomatic, which I don't fully agree with. yogini - Thanks for the confirmation. I tested my blood pressure at one of the machines at the store the other day. I tried to sit for a minute and be calm. 123/84 with a pulse of 90. I have not looked into inappropriate sinus tachycardia, but this seems like a very appropriate thing to check further. I do sincerely believe that the anxiety, sweating, and adrenaline response is probably at least mediated by something underlying that has yet to be found. I also wonder if I'm having a reaction to the Pamelor, which has been keeping 95% of my migraines away, as well as suppressing the constant auras I was having. The iPhone app is surprisingly quite accurate, as I've verified it when tested by other means (by hand, BP machines). At least thus far, I feel that my treatment has been too conservative. There are many weeks to months between appointments, and very few new things tried. I'm hesitant to drugs due to my medication sensitivity, but I'm been getting restless and asking the doctors if there is anything else we can try!! This may also be a telltale sign that I should at least look into IST further - I've recently tried Eucommia bark, which is an herb that is a non-selective Beta blocker, and is being discussed elsewhere on the forum. It definitely made a very distinct change in the way I feel, at least calming the feelings in my chest and bringing a calm I haven't known in a long time. Given the high prevalence of using Betas in these various disorders, I'm not surprised at its beneficial results. As a matter of fact, I've been talking about Betas with BOTH my neuros for months, and neither has even suggested trying them (dismissing my suggestion, if anything) until I pressed at my EKG that I'm not well enough to work yet, and I wanted to know what other options we had. At that point I was told Topamax and Propranolol might be options. I'm just wondering at this point if it would be easier to start over at a place that handles this more often, like Mayo, and make sure all the stones get flipped over, just in case there is something else funny going on in conjunction with / in addition to the presentation of POTS like symptoms, that wouldn't normally be considered. My inquiries about a Holter monitor, MCAS testing, etc have fallen on deaf ears thus far. I've babbled enough for now - my racing heart wouldn't let me fall back asleep , so I went outside and pulled some weeds after last night's much needed rain, and then decided to reply here. I've got to say that it feels nice to finally realize I'm not alone with all these crazy symptoms, and that I'm most likely just starting to find things that can help bring balance back to this insanity.

I've been frustrated lately, as there hasn't been much progress since my "dysautonomia" diagnosis. During my TTT, I apparently did not meet the criteria for POTS, but my QSART and sweat tests were abnormal. I recently discovered the iPhone app that lets you test heart rate on the fly - this is fascinating to me. I've been having, at least to me, what feels like a fast heart rate/tachycardia. My seated heart rate is in the high 80's to low 90's. Standing, it fluctuates around 100 give or take (usually a bit higher). Activity seems to drive it even higher. The worse this is, the worse my sweating seems to get, too. At least right now, it feels like pounding in my chest and I am all worked up and couldn't sleep if I wanted to. When I asked my autonomic neuro, what else could be done (aside from the 10 mg Nortriptyline, which is keeping my migraines at bay so far) he suggested Topamax or Propranolol. I'm so confused - isn't this a similar method to how POTS is generally treated? Is there a reason that I'm not being officially diagnosd with POTS? I'm not doing well enough at all to go back to work yet, but I'm so sick of waiting for something to change, as I've been off work for a year now. I'm starting to wonder what I should do next. Also, I've been doing reading about Mitral Valve issues again - are EKG's a common test that is done with dysautonomia, and do they generally find anything?

Doing a bit of research, it looks like Ginkgo contains compounds that are Platelet-Activating Factor Antagonists. This may be the next best thing to try, since the aformentioned drug is not available in the US....

Thanks for the information on Hypercare - will definitely be looking into this further!

THIS - I have to say that I most certainly agree with Rama. Inaction is most definitely a choice, and usually a bad one at that. Looks like my Eucommia isn't coming for a day or two yet, but I will be certain to give an update once it arrives. Also of interest is our common symptom of persistent migraine aura - what an eloquent way of putting what I have been experiencing for months into words!

I've been dealing with the sweating as well due to the heat. I was put on Pamelor/Nortriptyline for this and migraine prevention, and it was doing a pretty good job of at least reducing the sweat until the weather decided to go crazy and jump to the low 100's here in WI. Prior to the meds, I would be sweating ridiculously when the temp would go up even maybe 5 degrees inside. Well, I'm back to more sweating too, much to my dismay. I'd consider changing the dosage, but my migraine neuro is concerned as my resting heart rate is a bit higher since starting it with the autonomic neuro and she says that tricyclics can cause this. So, if you get bad hypotension, this would be out of the question. As it is, I'm wondering if it has made me a bit more sensitive to standing for extended periods of time. Depending on who you ask, my TTT results were probably borderline. HyperPOTS8 - is there more information anywhere - studies, etc. on Botox for this problem? At least for me, it is localized to underarms, hands, feet. I know in the past this "hyperhidrosis" was not able to be well controlled, and there were crazy treatments like severing nerves (which just caused sweating to migrate elsewhere - yuck). It seems like now they at least know it is tied to dysautonomia. Botox is also seeing some more use for migraine prevention, so this is interesting, but not surprising to see it being used for sweating.

I'm somewhat new here, and still undergoing tests and trying to figure everything out, but I can tell you this much - temperature changes definitely exacerbate my symptoms. I'm sweating a lot more, I've had a few migraines, and I have been more irritable as well. Going out to get the mail, and the accompanying short walk has been unpleasant. It has been high 90's into the 100's here in Wisconsin, and I've been having a few good weeks on a new medication but I have noticed that I am more touchy and seeing some relapse since the heat wave moved in. Thankfully, the weather is supposed to return to what are more normal temperature limits around here starting tomorrow, so I'm hoping the symptoms go away with the heat. Hoping that cooler weather heads your way as well.

Bummer - I guess this suggests that there is another mechanism at work that either overrides the histamine blockade, or degranulates the mast cells in another way. I'm happy to hear that Quercetin has been helpful - in the case of food allergy, the isolated form of it may be the safest bet after all. It makes sense that tea/caffeine can make POTS worse for some. The information you've provided makes me suspect I probably don't have a mast cell problem, as I eat lots of the foods in question and at least at this point have not had problems with them. I also haven't had the problems I've read about with alcohol and MCAS. At least in my case, this is why everything our business makes uses Organic Grape Alcohol. It is much more hypoallergenic and risk free for those of us who are sensitive. I tend to be sensitive to a lot of things, so I can certainly understand. That said, alcohol and water work differently for extracting various compounds. Hence, our tinctures use a mix of water and grape alcohol suited to the specific herb(s) in a given extract/formula. If Rama is having good results with a tea, this makes the most sense to try first. It is also the simplest method. Heat can, however, modify certain principles in the herbs as well. This complicates using herbs in a ground vs tea vs tincture comparison. I'd be curious to hear more about what Rama is doing. I'd be happy to send you some of the herb once it arrives, if you'd like. We actually have about a hundred herbs in stock at a given time. This is one I had a harder time finding through channels available to me as an herbalist, so I can understand it being more difficult to locate at retail. I would agree that formulas are the better approach, as the amount of any given herb is reduced. Also, the formula is more than the sum of its parts if designed by an experienced herbalist. It is also best to start with a small amount and listen to your body to see if the particular herb(s) are working for you. It is wonderful to have an intelligent group with so much information here.

Sure thing - hopefully there is someone out there who has given it a try. I'll report in with my results when it comes, too. I've never been tested for MCAS, so I'll have to look into that also. I plan to bring it up at my EMG appointment, as my autonomic neurologist is going to be there.

Thanks for the heads-up. I was told that tricyclics in general can increase heart rate, so for anyone with severe tachycardia they probably would not be a good choice. I should probably investigate St. John's Wort more, as it inhibits reupdate of the various neurotransmitters in a similar profile to the tricyclic class. I doubt it would have the same side-effects. Thanks for getting the wheels spinning up in my head... I have noticed a few days that I have a bit more intolerance, usually when I'm already not feeling so hot. Also, taking my Imitrex for a migraine one day made this very pronounced by comparison. It all makes a lot of sense now. Thankfully, compared to most, I don't seem to have severe intolerance. I do, however, want to get a heart rate monitor that I can use to data-log a day or two and see what is going on when I'm feeling better or worse, attempting to exercise, etc. For myself, the Pamelor was helping with the excessive sweating, at least until it got to be around 100 degrees every day. I think that probably makes even normal people sweat a bit! In the overall scheme of things, my does is 10 mg, and since any side effects are minimal it has definitely given me some of my life back from the constant migraines. But now that my curiosity is sparked, I'll be doing more reserarch.

Well, I didn't expect to start discussing herbs and nutrition so soon after my arrival! In the course of searching for answers for my own and others' health issues for a while now, I got into herbs, did some schooling, and started a small business a few years ago. Long story short, I've got a few wholesale distributors that I've been working with and I discovered that one of them actually had the bark, so I placed an order. I couldn't find it through any of the normal channels locally or online in a small amount to try it first, so I have a whole pound coming! I'll post an update once it has arrived, and I check it for quality and purity. I may be able to ship out a few samples or something to that effect. I'm planning to make a tincture (alcohol extract) of it, which helps preserve its strenth as well as allow for easy dosing. The amount of alcohol in a dose is very minimal and shouldn't bother anyone that is sensitive to drinking. As a matter of fact, breakdown of certain foods is likely to produce more alcohol than the amount in a dose of a tincure. In all honesty, I have not found a large amount of information on Eucommia as compared to some of the other herbs I use. Whether or not it would be a mast cell degranulator is a very interesting question, but may not be fully able to be confirmed without trying some. I would think that for anyone that has a hyperadrenergic state and MCAS that the degranulation effect of the Beta blockade would be less than that caused by the adrenal rushes, as long as there was no allergic reaction. Beta blockade may also be effective in combination with Histamine (H1/H2) blockade. --- Time passes, lots of research papers and studies read.... --- Interestingly enough, and this is part of why I love herbs SO much, Eucommia contains a iridoid glycoside called Aucubin. A research paper I referenced states that Aucubin is a specific inhibitor of NF-kappaB activation in mast cells, which might explain its beneficial effect in the treatment of chronic allergic inflammatory diseases. So, cutting through the jargon, this appears to say that Aucubin in Eucommia actually prevents activation of mast cells. This suggests that it may not have the same side effects of Beta blockers for those with dys and MCAS, but rather it may be beneficial for both. This is part of what makes herbs so superior - the fact that they are naturally built with numerous active ingredients, co-factors, and supportive nutrients. This is a great part of why they are so much more biologically friendly and do not have the numerous side effects of using a single chemical substance. While we're on the topic of MCAS, Quercetin actually is bioflavonoid which blocks mast cell and basophile histamine degranulation. It is sold as a supplement isolated from plants, though my first preference is to use foods that contain the substance as they have many other valuable co-factors that are missing in an isolate. Bee pollen, onions (especially red ones and in the outermost rings), black/green tea, citrus, and tomatoes are a few sources rich in quercetin. It also has MAO-A, MAO-B inhibiting properties as well. Interestingly enough, recent studies showed that organically grown vegetables had higher concentrations, so another reason to buy organic. Hope this sheds some light on the subject, and thanks for prompting me to do a bunch more reserach on Eucommia. This will be very helpful for an eventual formulation, as well when I am assist others in the use of herbs! I learned a lot!

Unfortunately, I reached the limits of my knowledge of alternative treatments and had to resort to using a few that were more conventional, but I haven't given up looking and researching for something better. I'm thankful that I've been able to stick with fairly well understood things, at least to this point. It makes sense that that cause of the migraines, at least for those of us with dysautonomia don't hold to the conventional "trigger theory", but rather to the underlying regulation of the blood vessels by neurotransmitters. It is entirely possible that it is some deficiency causing malfunction of the neurotransmitters or receptors. Recent research on diabetes has shown this to be the pathology of Type II Diabetes. It also appears that digestive malfunctions are common in dysautonomia and point to more dysregulation with the neurotransmitters/receptors, since there are more in the gut than anywhere else. It could be that something gets disturbed that affects absorption/uptake of a particular vitamin/mineral, or that the onset cause changes gene expression somehow. The resulting deficiency then ends up causing the bulk of the neurological meltdown. I need to try using a whole-food source of magnesium regularly again and see if I notice any changes. When I had the Vit D test come back, for me it reinforced the diagnosis with something concrete. I knew that it was a concrete sign that correlated with others that had similar conditions. I was surprised it was the only thing in the latest batch of blood tests that was actually low. I haven't had a retest, and don't how soon once can be requested, but I am curious to see if my levels come up. I've been taking two large doses each day, and when I started the Vit D, the migraines became substantially better, but the constant aura that would come and go didn't fully disappear until I started the Pamelor. I'm actually a bit excited for the EMG, as that is another concrete way to quantify what is going on. After so many months of confusion, it is reassuring to finally be defining the problem(s) at hand!

Thanks for the warm welcome and all the replies! At the very least, I am going to have to ask for my report to be amended, and I would like to see them run a free re-test for the TTT on me, since their equipment was faulty. If it is any consolation, they were going to be getting a new lab in the near future, so hopefully nobody else will have to put up with that! I was in chronic migraine for months, and the only thing that really has made a difference so far has been the Pamelor. I did some quick research on Gabapentin, since I was not familiar with it. To me, it looks scary due to all the lawsuits, side-effects, largely off-label use, and the fact it is a fairly new drug. The tricyclic class (Pamelor, et al) are fairly old and decently understood, as far as drugs go anyway. As I mentioned above, I am quite biased toward herbals. I don't know if it is the dysautonomia, but I have always had very strong reactions to medication, and also take things with a healthy dose of skepticism. Just my two cents. I am seeing an autonomic neurologist in addition to the migraine neurologist. Sometimes I wish I had one specialist, as I end up feeling like I'm being tossed over the fence back and forth at times. Both have done valuable testing, though, but eventually I may end up wanting to travel to a specialist location such as Mayo to get a much quicker and thorough solution. I've been off work about a year now, and the situation can't continue on indefinitely.

Hi, I'm just starting out here as a member, but I thought I should reply to this topic. I'm a trained herbalist, and I actually have some Eucommia Bark on its way to me, and am very curious to try it. Eucommia is a Nonselective Beta blocker, so it is similar in action to some of the others I have seen used for both migraine and dysautonomia. Given my past, suspicion of PTSD, migraine, dysautonomia, and hyperadrenergic inclination I am curious if it will help ameliorate or worsen any of my symptoms. I still can't determine if the hyperadrenergic state is the primary cause of my issues or the body's answer (secondary) to balance out something else that may be, in fact, hypoadrenergic. From brief research on Rehmannia, it appears to modulate the dopamiergic system and stop production of pro-inflammatory factors. This seems like a great candidate to be used in conjunction with Eucommia, or with it as part of a wider herbal formula.

I've come here as part of an already long journey (about a year and a half now) searching for answers to my bizarre health problems. I'm 29 and male, and have recently been diagnosed with Dysautonomia. I have had migraines since I was in my teens, however following a healthy lifestyle had all but eradicated them until about a year and a half ago when they came back with a vengeance, turning into chronic migraine. In addition to that, I've had other weird symptoms including excessive sweating, dizzyness, digestive distress tending toward constipation, and fatigue. My sleep patterns are a bit irregular and early mornings are awful for me. One of the biggest and most frequent problems is that I seem to be in a migraine aura for long periods of time, which sometimes comes and goes without actually becoming a migraine. Not eating tends to allay symptoms, which is ironically the opposite of what is normal for migraines. After being put through months of medical tests, I finally saw a specialist for the migraines. After some discussion of my list of symptoms and binder full of mostly negative test results, dysautonomia came up. Six months ago I went in for the battery of tests, and came up with abnormal results in a few. More blood tests later, I have low Vitamin D. I also have an EMG scheduled, which is now less than a week away. A few weeks ago, I added another medication (Pamelor/Nortriptyline) to my arsenal, which is the most help I've had in a while into feeling better. I've been off work for almost a year now, trying to figure out a way to feel well enough, often enough, to return. I'm really curious, as I see that most people here actually have a POTS diagnosis. During my TTT, the finger blood pressure cuff broke, and I had to have manual measurements that were much less frequent. I should note that I'm an Electrical Engineer, and that these problems bothered me a bit, as all the repeat attempts to get the equipment working caused interruptions to the testing procedure, which leads me to wonder if a properly executed test would show different or more reliable data to evaluate. My test results included abnormal Q-SART responses, Abnormal Sweat Test, blood pressure responses slightly blunted, TTT had a mild heart rate increase 8-14 beats per minute. It states evidence for patchy postganglionic sudomotor neuropathy. It should be noted that I was actually quite calm the day of the test, and that I didn't eat before testing, which would have made symptoms worse without a doubt, as I was instructed not to. I've been presently given Lexapro (5 mg AM, 10 mg PM) and Nortriptyline (10 mg), with Imitrex used for the migraines. The Lexapro seems to have possibly taken the edge off of the stress, uncertainty, and frustration of dealing with symptoms. The Nortriptyline has really made a difference in the frequency of migraine aura and migraines, but it isn't a miraculous change either. I was also suggested to use Thermotabs buffer salt tablets. I am also taking Vitamin D, due to the low levels. I should also note that in addition to engineering, I have studied herbs. I definitely think that I wouldn't have made it 9 months from the onset of all the symptoms without the herbs to help balance/mitigate the symptoms. I am still doing further research and am curious to try a few things yet to see if they help, knowing more about some of the problem causes. So, my future path at this point is to have the EMG done, possibly investigate mast cell disorders, and autoimmune testing. I'd love to chat more about all of this, and continue my process of learning. Since I have a science/engineering background and have studied biology and chemistry and their relationships, I do have a lot of gained knowledge of medical jargon, physiology, pharmacognosy, etc. I don't like taking "No" or "I don't know" for an answer, so I would love to join the others that are searching for answers. I think I've babbled enough for now, so thanks for having me and I look forward to meeting others here that I can relate to!