Introduction - New Member

[DoozlyGirl]

Hello everyone,

I wanted to introduce myself. My name is Lyn and I live in Wisconsin. I was diagnosed with autonomic neuropathy involving sympathetic and parasympathetic fibers of my cardiovascular and sudomotor domains at the Medical College/Froedtert. Orthostatic Hypotension and episodes of parasympathetic overdrive (involving plummeting temperatures as low as 94.9 and loss of conscousness/forced sleep) are my most debilitating symptoms. Just like many of you, I have been sick for years, but it wasn't until last year that my health issues forced me to stop working, change my lifestyle and focus on healing and finding symptom relief.

I have been a guest for the past year and just recently joined as a member. I guess I wasn't convinced this diagnosis would stick. Over the past several years, I was convinced I had so many other disorders, that as my symptoms shifted, I figured I'd be on to the next diagnosis. I included a pretty thorough list of current and past diagnoses in my signature. My symtoms are actually cyclic and I can even predict my worsening episodes based on my menstual cycle, seasons, time of day or night, what I ate, when I ate it and amount and type of activity. The best waqy to describe my condition is that I have massive swings - between hypersomnilence and insomnia, hyperglycemia and hypoglycemia, sympathetic overdrive and parasympathetic overdrive, hypertension and hypotension, salt craving to sugar craving, inablility to focus during the morning/day to super directed mental focus in the late evenings.

I want to thank everyone for sharing their personal journey, resources, recommendations, perspectives and insight. This site has become one of my go-to sites. I look forward to posting and responding to other's posts. Please feel free to share any advice or insight you may have. Thanks, Lyn

[Noreen]

Welcome. I am glad that you now feel comfortable posting but, of course, am sorry you have dysautonomia.

I hope you continue to find help here and look forward to getting to know you.

[Victoria]

Hi Lyn, and thank you very much for sharing! Sounds like you and I have a lot in common. I'm not fully diagnosed because I was given a screen rather than a full test back in '02 or '03, but it was abnormal in the same areas as yours. I'm preparing to go to Ohio to see Dr. Grubb so that I can try and put finality to my diagnosis.

Do you also have severe neuropathic pain? I do, and much of that also depends on day/nighttime trends, what/how much I've eaten, my level of activity (not much) and whether or not I am able to get enough sleep.

Take care!

[potsgirl]

Hi Lyn,

Welcome to the Forum! We're glad to have you, as well as sorry that you are suffering from so many symptoms. You'll find a lot of caring and supportive people here, and usually there's someone who can relate to any issues that you have questions about.

Hope to see you posting frequently.

Cheers,

Jana

[sue1234]

Welcome. I would like to know a little more about your hypoglycemia/hyperinsulinemia issues. I have a 20 year history of getting low blood sugar, and through a 5 hour OGTT, found I get a huge surge of insulin released.

[Sarah4444]

Hi Lyn-

Welcome, and sorry to hear all you have been through. I am interested to read you use light therapy. I have been thinking about trying that (am up in Northern Canada - lots of winter). I have noticed I generally feel much better on sunny days and can't figure out if it's just psychological, or if there is something physiological about it. I am beginning to suspect the latter and many patients with mast cell disorders have also mentioned this.

What kind of light do you use/for how long? Can you tell me how it helps you?

Thanks!

Sarah

[toddm1960]

Welcome in Lyn, sorry you had to find us......but glad you did.

[Victoria]

Welcome. I would like to know a little more about your hypoglycemia/hyperinsulinemia issues. I have a 20 year history of getting low blood sugar, and through a 5 hour OGTT, found I get a huge surge of insulin released.

sue and Lyn,

I'd like to hear about this as well. I've always had a thin build yet I have glucose intolerance with hypoglycemia and hyperglycemia. My A1C is elevated. I'd love to know if there's a connection here.

[juliegee]

Welcome Lyn-

...to our autonomically dysfunctional family. Forgive us, we all have so many questions for you I am curious about your PREVIOUS DX of MCS. I have MCAD, which is quite similar, and I would love to make it my PREVIOUS DX too How'd you manage that? I'm also curious about your blood sugar issues. I have severe hypoglycemia at times too- tends to be cyclic for me.

Thanks for sharing-

Julie

[DoozlyGirl]

Thanks everyone for such a warm welcome. I spent much of the past 18 months just trying to get through each day, then trying to live my life during the occasional 'good days'. I was naive enough to think that once I finally got the diagnosis of autonomic neuropathy, the stars, moon and sun would align, the heavens would part and many of my questions would be answered by the medical establishment. Fortunately, many of my questions have been answered here, many curiosities and oddities addressed and guidance where to turn my research on my peculier symptoms.

I will post separate reponses to the questions, otherwise this could get way long.....8>)

Lyn

[DoozlyGirl]

Mack's Mom,

George Kroker, an environmental allergist from La Crosse WI, gave me the MCS diagnosis, along with systemic candidiasis, food and environmental allergies, and Hashimoto's as cause of my 'hives', flushing, chronic fatigue, and issues with fragrances. Dr William Crook mentioned Dr Kroker in his books and I later learned he shared a patient with Dr Orian Truss, the MD who first identified yeast overgrowth leads to toxins and a host of illnesses. Sublingual drops, candida meds and allergen free diet really helped eliminate these symptoms. To this day, I can't tolerate fragrence/perfumes (forget the detergent aisle) or MSG, am seriously allergic to cats (anaphylaxis during delayed allergy testing), can't digest milk and have issues with wheat. Those are all things I have learned to avoid/limit, so not much of a daily issue there. Weird sidenote, but my "hives" never itched and I had serious flushing all the time, but now only seem to be triggered by alcohol, which I limit due to dysautonomia. Incidently, Dr Kroker did mention that I have 'active' mast cells, then put me on gastrochrom, zyrtec, and H2, and gave me an epi pen (never used) which was amazing in mitigating my symptoms. I didn't consider the connection until reading all the posts on MCAD and mastocytosis. Maybe I still have immune issues what are in the background?? I do struggle with new onset of GI issues.....

Lyn

[DoozlyGirl]

Mack's Mom, Sue and Victoria,

My hypoglycemia was hard to figure out because I don't get the typical sympathetic symptoms (tachy, adrenaline release), which is called 'hypoglycemia unawareness' and tied to autonomic neuropathy. Instead I get double vision which first occured after getting off a massage table. I then figured out massage drops blood sugars. Each time I get double vision, I'll eat something sugary, like hard candies and protein, like nuts, then my double vision would go away within 30 min. My sugars are normal (tested multiple times even when I was still having tachy events), A1C is high end of normal, and insulin was high during delayed glucose tolerance testing. My endo at the time mentioned Metformin, but then my labile BP issues took center stage, she referred me to autonomic neurologist, then decided she can no longer help me. After spending a year with my neuro team working on dysautonomia, I am back to endocrine issues. I know I have cortisol issues which are tied to sugar regulation, and worse with my period. I see a new endo in two weeks and hope she will be able to help me sort this all out, meanwhile I make sure to have a bag of goodies with me at all times when I leave house.

Lyn

[DoozlyGirl]

Victoria,

Thanks for pointing out that we have so much in common. I would love to hear more about your journey, so we can compare notes.

Funny thing about the neuropathic pain-- I had it for years, but then it suddenly stopped. Guess my autonomic neuropathy (AN)progressed past the pain, or my supplements helped (high doses Vit D and B-12). I recently joined a local peripheral neuropathy (PN) support group, because AN is categorized under PN and I am always looking for new insight. We spent an hour today talking about meds and supplements for the pain - most have tried gabapentin, lyrica, neurontin (all seizure meds)but many couldn't tolerate the side effects. The group's vitamin guru, was diagnosed with ALS (Lou Gherigs)17 years ago and was wheel chair bound before using supplements. He found a good regimen and now has no pain and barely needs his cane. This group swears by multiple supplements for repairing the PN nerve damage.

--> Alpha Lipoic Acid 600-1200 mg (split 1200 mg dose into 600 in am and 600 mg in pm)

--> Acetyl L-carnitine 500 mg

--> Co-Q 10 200-400mg. (I have read up on Ubiquinol, a newer better version need only 50mg to 100 mg)

--> Vit D 3 - up to 3000 mg

Sleep is huge for me, and I struggle with it everynight. I have a circadian rhythm disorder and my body won't settle in until 4-5 am. I do use multiple products to help me sleep and when I alter my routine, I can't sleep or stay asleep and I pay for it the next day.

Good Luck with Dr Grubb!

Lyn

[DoozlyGirl]

Sarah,

Last summer, after a sleep study identified central and obstructive sleep apnea, I was treated with a APAP machine (automated CPAP), which made a world of difference for me, but I still had sleep issues, falling asleep. After working with a sleep specialist, he diagnosed Delayed Sleep Phase Syndrome, a circadian rhythm disorder, common with autonomic dysfunction.

Over the past 9 months, we were able to coax my body into readjusting my sleep trigger by moving my internal clock ahead using melatonin and light therapy then keeping a strict sleep schedule. Unfortunatley, during day light savings time last month, I lost my routine and will have to manually reset my hypothalamus again. This process is called chromotherapy and while using low dose (starting with 1.0 mg) melatonin 90 minutes before your internal bedtime (let's say your body falls asleep at 3 am), then at 1:30 am, take the melatonin. Go to bed at 3 am. The next night, you advance the asleep time by 3 hours. You then take the melatonin at 4:30 am and go to bed at 6 am. You keep doing this until you reach your desired bedtime, ie 10 pm, etc. Here is where the light therapy comes in - each morning, after 8-9 hours of sleep, you need light - sunlight, or special light device for 15-30 minutes to help reset your hypothalamus. The hypothalamus gives a signal to the pituitary when to make melatonin and the evenings production of melatonin is triggered by morning light from that morning.

This therapy has helped blind people adjust to a sleep schedule. Research has found that this concept of light therapy is helpful with those with Seasonal Affective Disorder. Living in Wisconsin, I understand how no sun can impact one's ability to function. My local MDs have all of a sudden been praising Vit D to treat all sorts of health concerns, because we don't get enough sun here. They say nearly 90 percent of locals fall below RDA of Vit D, now that they are testing for it. I have looked into a light device and have found the type and brand I plan to purchase. I thought that since we're coming into summer, I wouldn't need to buy a device, but we have had a particularly sunless spring. My sleep specialist was emphatic on 10000 lumens. Newer technolgy uses blue light spectrum, verses full spectrum light.

I'd be happy to answer any questions you may have.

Best wishes, Lyn

[Victoria]

Mack's Mom,

George Kroker, an environmental allergist from La Crosse WI, gave me the MCS diagnosis, along with systemic candidiasis. . . .

Lyn, I saw Dr. Kroker in 1984-85 when he had just started his practice. He diagnosed candidiasis, beef, mold and milk allergies. Unfortunately, MCAD wasn't a consideration that long ago. He is an excellent physician.

[Noreen]

Since you have put so much research into light therapy, I would really appreciate your sharing the product you have decided on. My cognitive issues won't allow me to keep the info I research.

tks

[Sarah4444]

Thanks, Lyn. I would also be interested to know which light products you think are worth it. Like Julie, I noted that you have a lot of the symptoms of MCAD - I also have to avoid the detergent/fabric softener section of stores.

[DoozlyGirl]

Victoria,

I really liked Dr Kroker, haven't been back for years, because once I went through his treament recommendations, the symptoms that were left screamed "endocrine." Will definitely check out to see if he can get me started locally with possibility of MCAD. Are you from the midwest? Have you had reoccurences of candidiasis?

Thanks, Lyn

[Victoria]

. . . .the symptoms that were left screamed "endocrine." Will definitely check out to see if he can get me started locally with possibility of MCAD. Are you from the midwest? Have you had reoccurences of candidiasis?

Thanks, Lyn

Lyn,

My symptoms spell endocrine dysfunction but no one will treat me. I am in the midwest; Iowa to be precise. I have had recurrences of candidiasis in the esophagus and lung (that I know of). Let me know how it goes with MCAD and Dr. Kroker, will you? Nice to keep a doc (or three) on the back burner if plan A or B doesn't pan out!

Take care.

[DoozlyGirl]

Reen and Sarah,

I just pulled the trigger and ordered the Philips GoLite Blu hf3332 light therapy device from Amazon with free shipping. This is the mid-price model, and includes a timer, clock, rechargeable battery, AC/DC adapter and carrying case. The higher priced model, hf3331 is the same as above but includes an international adapter, and the low-priced model must be plugged in and has no clock. Should arrive in a few days, so if you like, I could let you know my thoughts once i use it.

Last summer, when I did my research, I learned that Apollo had been the industry leader in light therapy for years, and brought the concept of blue light therapy to market, after identifying that the bandwidth of blue light is over 5 times more effective than full spectrum light at triggering a neurochemical shift in circadian rhythm, SAD and depression. Apollo was bought out by Philips. My sleep specialist gave me a pamphlet from Apollo listing published studies supporting light therapy in general and specifically blue light (performed at Thomas jefferson University, Harvard, Brigham and Women's, Yale, NIH and other sites). Sorry I don't have a link. Previously, 10,000 lux (I think I called it lumens in a previous post...sorry) was the recommended light source strength.

I didn't purchase it then, because funds were tight and wanted to give my chromotherapy a try with sunlight. I did pretty well keeping thaqt schedule until day light savings time, and am now revisiting my sleep issues. So many symptoms, so little time and money.....

Let me know if you have any specific questions.

Lyn

[Sarah4444]

Thanks, Lyn. I'd love to know what your impressions are once you have used it.