Having Very Strong Symptom Improvement With Magnesium And Klonopin. Mast Cell

[Miqual]

Still waiting on SLOW referral process as well as non-cooperative/confused primary care Dr. to finally get diagnosed after a year of dealing with the second outbreak in my life of what in my teen years 20 years ago during the first outburst, was diagnosed by a neurologist after 2 years of traveling to different Dr's as an observed symptom pattern he called "Hyperdynamic Autonomic Nervous Disorder" with blood vessel control loss. He told me they didn't have an actual understanding of the disorder back thena nd after trying beta blockers that didnt work, basically I healed with a few years time (although have been dealing with the symptoms in moderate levels the whole time)

During this time with the second outburst I've been using this board for research help on things to do on my own. First improvement came with massive increase of salt and using Gatorade/Poweraide and lots of coconut water during the day. Started light exercising again first as much in the laying down position as possible, but now upright too. But 2 things recently have seemed to REALLY help and wondering if this is indicative of diagnosis:

1.) Magnesium supplementation.

2.) Klonopin

After reading about some of the Mast Cell Disease tie-ins with Dysautonomia, having had multiple 24 hour urine tests confirming i'm hyper-adrenal, and having a STRONG family history of Fibromyalgia and Arthritis diagnosis, I asked my Dr. to prescribe me Klonopin. She very much went along as she's tried several times to imply this is psychiatric and dump me off on psych only to have them send me back saying "no he has a medical condition" (in fact in the interum between outbursts i was diagnosed bipolar as well as having other things such as exertion migraines and atypical chest pain). And the Klonopin is really helping do. I had been struggling to sleep, and waking up on average 5-6 times per night to urinate, drink more, and feeling speedy. That has gone down to 2 times. Feels like it slows down the hyper-adrenal part too. But most importantly, it seems to have really helped along with the Magnesium in vasio-restriction, as my veins used to absolutely bulge out of my body, and when I elevated those parts, they would completely empty and be non-swollen. The veins are now so much smaller on both the MG and Klonopin.

Do any of you have Mast Cell and are on these meds to speak to this being indicative as Mast Cell being the underlying driver of the Dsyautonomia type symptoms I have?

I'm basically driving the process for an overwhelmed/busy primary physician and doing all this research and telling her what directions to take as she's tried to give up and say there's nothing she can do for me several times. Hoping to be able to maybe push her in Mast Cell investigation and wondered what the testing mechanisms are for this.

Thanks everyone, hope you're all hanging in there!

[Kellysavedbygrace]

Hi M,

I'm curious as to what, if anything, you think triggered your second outburst? And how are your symptoms similar or different?

I suspect I have MCAS and have an appt on Monday in Charleston to see Dr. Afrin, a well known hematologist who specializes in MCAD (you may have heard of him on this forum.). Anyway, I don't know of the relationship between Magnesium supplements and/or Clonazepam to MCAD. I can tell you, however, that I am on both and find both to be slightly helpful. (I would not describe it as "strong symptom improvement." I have also stopped taking BBs bc they were not helpful and causing side effects.

It sounds like you might want to change your primary care doc. It is so important to have a good one who is willing to study and learn more about your condition with you. I found a primary doc who also runs a research clinic- mostly pharmaceutical trials- who is not too swamped w a large Pt load and loves research. I'm his only POTS patient and he is willing to review info and work w out of town docs. I'm even able to get IV saline administered in his office as needed.

[Angela]

dont know if I have mcad but klonopin and magnesium seem to have improved me. Klonopin worked instantly to calm adrenal rushes but I started some vita supplements including magnesium as well as an h1 and h2 and have noticed some more improvement, I hope attributed to the vitamins and the antihystamines and I have been able to do 25 minute floor stretches and yoga. I'm not on any bb's either. You could look into motherwort, I'm going to purchase once I can get to a vitamin store but is highly recommended for its calming effects (same as magnesium and klonopin), and high heart rate, it's similar to a natural bb from what I understand. I got that tip from someone else on the forum.

[Miqual]

Kelly..

This outburst came with a dual whopper of a summer: knee surgery under anesthetic followed shortly by emergency root canal surgery with anesthetic.

I had knee surgery and went under anesthetic in May of 2011 and that summer started feeling worse and worse. I thought it was due to the intense physical therapy making me more tired, but by the end of July, I started getting scared because it started feeling like my childhood bout all over again, and that was my worst nightmare. (I had been basically trying to block out my childhood experience as a defense mechanism for survival, and forgot about the diagnosis when my childhood home we rented was torn down after being discovered to be infested with toxic mold and the landlord called crying and apologizing saying she thought it all might have been her fault. I never told any of my new Dr's and spent my adult life getting diagnosed with one weird thing after another) Back to this time though, i was getting flushed skin in face, heat control issues (too hot or cold) some light chest pains at certain times, racing metabolism, exhaustion, trouble breathing in the prone position, waking up several times a night. The real stuff kicked in that August 2011 when I had to have dental surgery and get a root canal and had dental anesthetic. Right after my face started going numb, felt like my throat and sinus weren't doing their natural clearing, and I was feeling worse and worse along with it, and all the other symptoms were quickly getting worse. Could see it in pictures too, getting thinner and thinner, and my right eye started drooping. Started seeing Dr's in September 2011 and they were initially looking into the throat issues when I was hospitalized with an unknown viral infection, and then while in the hospital, I caught a rare form of strep called Strep G while there too. After that point I never recovered, and was getting intense pain in my neck, numb face, light headedness, pounding headaches, digestive issues, really bad chest pain and pressure, the feeling that my throat was completely collapsing in, bouts of itchiness, my veins started bulging out of my body, had mystery bruising on me, would get super flushed, racing metabolism, cold/white hands and feet, buzzing in my ears, times of blurred vision, basically most of what I've come to find out that people with Dysautonomia experience. They did a whole bunch of testing, starting with cameras in throat, then onto brain MRI/MRA, sent me back to psych who sent be back to medical, blood tests for various things, and nothing was coming up. It was then that I finally mentally got past my denial/blocking I had done about the childhood stuff, and told Dr all about it and she started to backtrack testing they did back then. Immediately they hit on something with 24 hour urine test showing high levels of adrenal hormones on several rounds of them, and sent me to specialist for Pheocytoma adrenal gland tumors. They did adrenal CT and no tumor, and he tried to send me back to Psych who once again said no, its medical. At that point my Dr basically gave up. But I pulled the childhood medical records for her and we found the "Hyperdynamic Autonomic Nervous Disorder" I had been in denial about and it all came connected. Through me doing online research of adrenal disorders and autonomic nervous disorders I found out about Dysautonomia and POTS and literally cried when I read about peoples experiences and how it sounded EXACTLY like me. Since then I've found this board and been pushing my Dr. She tried Mayo and they rejected my case, she then tried the NYU Dysautomia Center and got turned down by them also.

And thats where I am now. I've healed VERY SLOWLY with time, and the return to light exercise, tons of fluids, tons of gateraide and coconut water, and now Magnesium and Klonopin are helping. But still no Dr. assistance

[Guest maia]

wow, you just rang a bell with me. i used to work with an environmental medicine doc who used to test for mycotoxins (mold exposure toxins and i think the lab was great smokies) and when found used to give tri-salts ( which i believe are calcium, magnesium and potassium ), quercetin and high doses of vitamin c. he also put everyone who tested positive for mycotoxins on a completely mold free diet and nystatin. food for thought...

[chipper]

Dinet is like being home for Dysautonomia. It still makes me tear when I read the posts, because I know what they are feeling. There is always hope!! You will get lots of help here. So sorry you have been through so much. Hope you find a good doctor soon.

[NaomiSpellman]

Was the Bipolar diagnosis a false diagnosis (do you feel it is at this point)? I am hoping to become enlighted re: how to manage ongoing Dysautonomia symptoms along with Bipolar disorder. I have not have improvement from Magnesium. I also have family history of FM and Arthritis, and very weak joints (slipped or compressed disks; neck and back pain; joint injuries and sprains and breaks).

Thank you,

Naomi Spellman

[Dizzysillyak]

I take klonopin for myoclonus and it's prescribed for me in case I have another seizure. I can't take very much of this drug without becoming a dim witted zombie. Lol. I'm currently taking between 1/4 - 1/2 of a .125 mg at night for sleep. I need more or less based on diet and stress.

I also take several types of magnesium but only notice a calming effect from "natural calm".

Neither of these helped my dysautonomia. If anything, I need to lay down more if I take too much of these.

Mc meds have lessened my oi to the point where I don't feel the overwhelming need to lay down frequently throughout the day. Pots (30 pt hr jump after standing) was keeping me supine most of the day.

Fwiw, if you're eating foods you're intolerant too, caffeine esp, you may benefit from taking these out of your diet. I suspect this will help you feel better than drugs. Imho, the paleo / wahls diet / avoiding your intolerances is the best diet plan. Dr wahls has videos on the web.

Tc ... D