Newbie Here - Intro & Questions

[Zap]

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!

[E246]

Welcome to the site. We are all looking for answers so if your scientific understanding throws any light on anything new - let us know. In the meantime I hope you find some relief. There is lots of info here and it takes a while to take it all in but it has been a lifesaver for me.

Take care.

[sue1234]

Welcome Zap! I would wonder about the results of the TTT if the equipment was malfunctioning. If you're like alot of us, you'll have a repeat TTT next year or so.

[bellgirl]

We are right here for you and with you...Zap, you need to meet Ramakenesh, since he is very knowledgeable about all the science involved, as well. It is good to be curious about the science behind a disorder, where there are so many questions yet to be answered. Just recently there has been some research on the SLC6A2 gene and it's suppression in POTS. Look for other posts that are on here. There is a wealth of knowledge to be had. I also come from a scientific backround being a retired RN, so all are welcome here, knowing and understanding just how it all is...sorry you are sick. Glad you found this site. A lot of your symptoms sound like mine, except for the migraines, unless I am having silent ones, which was brought to my attention recently. My medications and supplements that work for me are listed below. It's been great being a part of the DINET group.

[LMG]

My POTS seemed to have started with migraines too. Last year they really accelerated and now I am pretty ill with both. I have Low D and have also just met with a migraine specialist. I debated between Pamelor and Gabapentin and think I will start the gabapentin (neurontin is brand name) this week.

How long did it take for you to see changes with the Pamelor and did it cut down on frequency, severity etc? Any info is appreciated. Glad it is helping somewhat!

[mwise]

Welcome to the best site and group of many knowledgeable individuals with similar yet diverse backgrounds. Many of us have alot to share with similar symptoms and diagnoses. I would recommend having a repeat TTT. Most of your abnormal results were similar to mine along with an abnormal TTT. I was diagnosed with OHD(Orthostatic Hypotension Dysautonomia) Autonomic Neuropathy-Idiopathic/Auto-immune in nature. Good luck and keep us posted.

[DoozlyGirl]

Welcome Zap,

You've come ot the right place. While the majority of people on here seem to have POTS, you'll also find a bunch with other forms of dysautonomia. I have sudomotor and cardiovascular autonomic neuropathy, involving postganglionic parasympathetic and sympathetic systems. I have also had issues with migraines for dozens of years - complicated and hemiplegic migraine with and without aura. I've had to make dozens of accomodations to regain some functionality. Orthostatic hypotension keeps me in bed some days and since my body doesn't sweat properly, I'm kept in side when it is really humid and hot out. After all other causes have been rule out, I've been pursuing mast cell disorders and am forunate to see one top US mast cell specialists, who believes I have MCAS. There is a ton of great mast cell info on here to get you started, but there are other resources as well when you are ready to dig in.

I agree, sounds like you really need a repeat TTT, where the equipment is not faulty. Does the report state inconclusive due to faulty equipment? If not, get the reading doc to add that to the report (your referring doc may have to put a little heat on the reading doc). They should repeat the study at no charge. The tech working with you shoule have also filled out an incident report and had the clinical engineering department evaluate the equipment. It should not be used again until it is fixed or replaced. Wonder if others are in the same boat?

May I ask if you are seeing an autonomic neurologist? If not, let us know where you are located and we may be able to help you find a specialist. The migraine specialist may or may not have expertise in autonomic nervious system.

Best wishes. Keep posting questions and we'll help how we can.

Lyn

[Zap]

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.

[issie]

Yeah, I'm into alternative things too and prefer that over traditional meds if it at all possible. I have been able to support myself for most of my life with alternative meds and have only recently resorted to again attempting Western medicine. There comes a time when we sometimes have to when the alternative things just don't work ----or we haven't figured out the right combinations. I've done a whole lot of experimenting with different things over the years and some help and others don't.

It seems that many of us deal with miagraines - some full blown others silent. It could have something to do with the auto-regulation of the blood flow to the brain, lack of oxygen or some deficiency that we haven't figured out. Maybe magnesium.

There seems to be a whole lot of us with low Vit D levels and in my case - despite high intake - I can't seem to get my levels to come up.

I bet this will be an interesting subject matter for you being an electrical engineer and the electrical system of the body going wacky. Science is definitely interesting and the things we can learn are endless. Our bodies are some very complex and wonderful machines. Wish we just had the blueprints to all of the components and circuitry and could figure this out better. Good to have another researcher here. I'm sure we will benefit from some of your discoveries.

Issie

[Zap]

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!

[HyperPOTS8]

Zap, I'm glad the pamelor has helped your migraines. Note, however, that the TCA's are on the list of drugs that can worsen orthostatic intolerance (see things to avoid on the dinet home page).

[Zap]

Zap, I'm glad the pamelor has helped your migraines. Note, however, that the TCA's are on the list of drugs that can worsen orthostatic intolerance (see things to avoid on the dinet home page).

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.