Klonapin, Excitotoxicity, And Fibromyalgia/pots Connections

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http://www.prohealth.com/library/showarticle.cfm?libid=8021

Since being diagnosed with OSA (sleep apnea) a couple years back, I was in bad shape--awakening with extreme agitation and shortness of breath (dyspnea). I'd describe the shortness of breath as actually "becoming exhausting by having to breathe" rather than being air-starved. During those awakenings I'd try the ativan or lorazepam scrip and all they ever did was make me even more agitated! Luckily, or maybe I should say providentially, I finally was prescribed klonapin to try, and it worked immediately---which set me off to researching the drug, and why it helps some OSA or POTS patients and not others.

During this time I kept having severe POTS symptoms, but I thought it was due to the apnea: dyspnea, cardiac events either at night or day (plunging heartbeat or wildly fluctuating BP). Finally an ENT Surgeon and Sleepdoc told me flat out: "your sleep apnea is under control with cpap---your other symptoms HAVE to be caused by something else, which led me to Dysautonomia.

Anyways, there are multiple myths surrounding Clonazepam that MOST doctors have fallen prey to: that its basically just a benzo "anti anxiety" med. Actually, it was originally developed as an antihistamine. The other (controversial) myth is that its HIGHLY addictive and that you cant be on it long. Im definitely not giving medical advice, but only my own experiences, but I have a friend with MS who's been on the drug for 25 years. My original sleepdoc told me the drug in his experience was a miracle drug similar to aspirin for those with heart issues. And I can only relate that I use the drug "as needed" and that I've never felt mentally anxious before using it--- just physically anxious/agitated in the wake of a sudden POTS flare up or an Apneatic event (such as plunging 02 levels (oximetry) which awakens you in the night and presents like the worst panic attack imaginable.

This link is to Dr. Cheney who pioneered fibromyalgia research http://www.prohealth.com/library/showarticle.cfm?libid=8021

He maintains that klonapin alongside doxepine (in controlled doses) and with magnesium acts as the ultimate histamine blocker on the planet. Its really worth studying out if you have POTS, partly because there is a reason why it helps some people and not others.

And thanks for the site here!!!! Ive been lurking for about four months, but can finally post or respond to posts. I can relate to almost 100 percent of them except the joint pain and extreme fatigue reports. My symptoms never involve pain, but they do involve what I call extreme weakness instead----along with dyspnea, heat intolerance, the shakes, a spinning type of vertigo, and extreme agitation (like I just drank 20 cups of coffee). Before this forum, I never knew how dehydrated I was or how much salt could help. My local docs typically are anxiety prescribers due to complete ignorance of dysautonomia.

[Mytwogirlsrox]

Interesting too when MCAS is considered an etiology

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yes, i know of others with mast cell issues using klonapin. One way to understand it from Cheney is that the neurons in your brain are firing rapidly and the histamine properties of that "drug cocktail" is about the only solution to that CNS disturbance.

With doxepine you get the added benefit of a sleep inducement--can rid your self of ambien if youre using it.

Magnesium is probably the major deficiency in the American body, other than calcium, which is caused by porous intestine disorder blocking essential nutrients from finding the bloodstream, thus osteoporosis.

its also interesting to google food exciotoxins: MSG, aspartame, caffeine, in particular, but for those who've gone into

allergic fight or flight response to foods, corn, gluten, peanuts, and a host of others.

Anaphylaxis can come into play with those---treated with another histamine blocker.

[Guest Alex]

Spinner,

thanks for the wealth of info in your post, and welcome to the forum.

Alex

[hippychic258]

Does ativan have the same effect as klonopin? Will anybenzo work or does it have to be klonopin? Also what doe sit lower blood pressure which is not good with people with low blood pressure? Does it relieve Pots symptoms?

Welcome to the forum!

[spinner]

Apparently Ativan really helps some people with anxiety--not sure how many POTS people use it, and I dont know if its considered a histamine blocker at all.

When my Pots/OSA struck i was getting Ativan and it made things much worse. Im really thankful to have had a physician who gave me an "old" drug like klonapin, because it was the first time

I felt human after a flare up. It doesnt give you the "buzz" of valium, it just makes you feel normal again.

Ive never had ongoing low blood pressure problems, so your doctor should know. I DO have low hearbeat, probably from playing sports all my life. Thus i cant use beta blockers for pot symptoms.

But ive heard klonapin could be bad in the wrong doses for low blood pressure.

[brethor9]

I have taken small dose lorazepam for over 2.5 years....it is a benzo like klonopin and out of all of my meds it is the only one that has helped put any kind of dent in my symptoms....I have suspected mast cell issues and it actually helps alot with those.....it doesn't do anything for my adrenaline issues oddly enough. There are quite a few mast cell articles that recommend using any benzodiazipine as part of mast cell treatment (they all bind the mast cell receptors). Dr Afrin (a well known mast cell specialist has talked about it in his presentations.) Klonopin I couldn't take...found it way too strong and sedating and worsened my lighthededness....interesting how each benzo is different depending on the individual. I am not concerned about addiction as it keeps me from being bedridden.....I think that is more important

[spinner]

Thats the truth--getting totally nonfunctional would be way worse than a slight med addiction. After my intial symptoms of feeling out of breath, i'd add that to the list--id rather use a drug even if it was considered potentially dangerous than be out of breath.

Im curious what "mast cell issues" feel like or present compared to other forms of pots????

The benzos are weird, hard to say whether every body system needs something unique or our conditions are different and

it takes awhile to find what works. Its trial and error pretty much. Once you find something that makes a dent in making you

functional its like a giant breakthrough, and theres always that fear that the benefits will eventually wear out. Im going on

almost 2 years with klonapin, so hopefully im good. Im weird because i only take them when i feel a flare up, or when i

feel a little off but want to get some excercise that day---never just to keep a regular dose going.

[Dizzysillyak]

I was on klonopin for 16 years and it never calmed down my reactions to gluten, msg, etc. The only

way any med stopped the excitoxin reactions I had was if I took enough and became a zombie.

Removing these toxins helped calm me down completely. It took about two years to recover from gluten, dairy, soy, msg, etc and ten months to finally get over

what caffeine did to me. And we're giving this to our kids ? Huh ?

But I still appear to be getting vasodialation from some unknown source because Wal-zyr stops it and

is allowing me to say upright for hours now. I just have to keep taking it throughout the day. I just started this about two weeks ago but the change was immediate. I'm just fine tuning the protocal

to include a variety of h1 and h2s.

No excitotixins are involved in my orthostatic intolerance as far as I can tell. I stay totally calm since giving up caffeine until

I start adding in certain supplements. I know Adb12, mb12 and p5p are toxic to me sometimes

but not always. I'm assuming there are toxic fillers in these.

Fwiw, I never heard of Cheney curing anyone so although I respect his opinion, it's no better than some

of the great info we find on the web.

Tc .. X

[brethor9]

Spinner....My suspected mast cell symptoms are constant nausea, major gastro issues, dermographatism, several forms of urticaria, flushing, itching, shortness of breath, tachycardia, labile blood pressure, joint pain and swelling, headaches....etc, etc...... I could be mistaken but I don't think patients with other forms of POTS have the flushing issues or dermographatism, urticaria etc. In regards to the lorazepam oddly enough I have never had to increase the dose and in fact usually take less but my symptoms definately flare up bad if I dont take it....for whatever reason my system needs it right now. I have to be off all of my H1, H2 and other meds for immune testing on Wednesday and my system is already in serious revolt

Dizzy....I hear you on the toxins; I am gluten, soy, dairy, nut, low histamine free but I still fight with symptoms....

[Dizzysillyak]

Hi brethor,

I empathize with you on being off your meds. Hugs .. When you find something that works it's

hard to give it up.

Sorry to hear you're having excitotoxin symptoms still. I'm only ok because I'm on the wahls / paleo

diet so I only eat organic meats, veggies and fruits. I over produce antibodies to gluten so I have

no choice but to avoid all cross contamination.

Fwiw tho I'm learning some tricks on how to undo my excitotoxin reactions. I just got nailed from

eating lamb that had been wrapped in freezer paper. Bleh !

Charcoal helps as does Himalaya liver

care. I can only take 1 charcoal capsule once in awhile tho. It seriously depletes my nutrients if I take it even

twice in a row. I always take chelated minerals the day afterwards.

I use Natural calm to help move the toxins out of my body too.

I'm Not sure why kefir works this way for me. I become allergic to it if I use it too often but it works great

If I use it sparingly. That's all I know for now.

I can't imagine this working if I was eating all the toxic food that I was eating before tho. I unknowingly was always "jacked up" on something.

Good luck on your tests. D

[issie]

I tried doxepin and it did the reverse of what it was supposed to do - created anxiety and I couldn't have slept if someone knocked me in the head. Ativan does the same thing. I have not tried the klonipin. I do find that a very small dose of Serax - will help if the anxiety is severe. I use it very rarely.

I have some new ideas about MCAS lately. I'm finding that the H1 and H2's are causing me to react even stronger when I have a reaction. I have been leaving it off and only using Nasal Crom and Quercetin. I think my reactions have been less and my brain fog is much improved. The H1 I think was causing some pretty bad memory and attention issues. I have read that some docs feel that Quercetin works better than some other histamine blockers. Mast cells release more than just histamines - seems like it would make more sense to work on the mast cells themselves rather than the release that a mast cell does when it's already activated. Therefore, stopping the reaction in the first place with the Nasal Crom - seems like it makes more sense to me.

Spinner, I have apenea too - and can relate to the anxiety that not having enough O2 to your brain when you sleep causes. I however, think that sometimes my CPAP makes my POTS worse. The autonomic system is so sensitive and it really causes you to not be as comfortable because of the headgear and air blowing down your throat. I think it messes up some aspects of my sleep and I don't go into enough REM sleep with it. I have found myself using it only part of the night and since I have started using magnesium every night - find that I'm resting better and feel more relaxed with it and my apenea. I guess it would depend on the cause of your apenea and how bad you have it. I was told that mine was bad enough that I had no choice but to use it - I would have to get used to it. It has taken me years and I still hate the "thing".

Issie

[spinner]

wow breth, you truly have a full time job just managing your symptoms. People who dont know us have no idea how mentally exhausting keeping track of everything is. I definitely believe that its the mental stress that is the worst---having to micromanage every hour of your life.

Issie, you nailed it. Where OSA and POTS come together, what causes what, is almost impossible to determine. I was convinced for a long time that apnea was causing all my problems because OSA was diagnosed first. I was in denial. I still have no idea what causes what. For all I know OSA caused my pots rather than the dental work I had done that i tell people about. I was in pretty bad shape there for awhile, theres nothing less fun that waking up at 2 am feeling like youre breathing through a straw and that somebody injected toxic sludge into your veins. When i was at mayo jacksonville 1.5 years ago I was practically suicidal because i felt so terrible. Not that i wanted to die, but i could barely stand living. Here's the stupid part: i was eating my usual cheerios and milk every morning and going over there for tests, not knowing the milk was sending me into orbit. Amazing to think how ignorant i was back then, its been a crash medical course since then.

And as far as cheney, im not a big fan or anything. I just think his research is interesting. I've found that drug trio combination to be helpful, but its a crapshoot whether it would help anyone here. Just like Ativan, you either love it or it makes you feel like a zombie.

[Dizzysillyak]

Issie,

Thanks for reminding us that more than mast cells are involved in a histamine release. Another good reason for avoidance protocals. I need to be reminded that I can't go back to eating my known triggers.

A positive or negative reaction to these meds or supplements is individual.

I'm responding to Wal-zyr but the other h1s have caused problems. Vistaril knocked me out. Allegra and brand

name zyrtec made me too drowsy to sit up. Walgreens claritin has lactose monohydrate which caused

a Paget's flare so that's out for me.

It could be that part of my positive reaction to Wal-zyr is the corn starch. I know from experimenting

that this gives me energy. I actually consider this an excitoxin for me but am chosing to enjoy the

energy boost for now.

I prefer supplements but I could just as easily have negative reaction to quercitin.

I'm not so sure that quoting Cheney helps us. imho, It's really not that difficult to repeat what one reads in

a medical journal. Esp if you're familiar with the jargon. Imho, Evaluating all the info provided to draw realistic conclusions isn't happening in traditional or holistic world.

If it was we wouldn't be here. The problem I see is that Cheney is a cfs specialist so he carries weight with some

people. But imho, his record speaks for itself.

Tc .. D

[brethor9]

Issie I totally agree with you about the anti histamines ....I reacted horribly to every single one....I actually asked my doctor if you could have a reaction to them? I finally managed to tolerate childrens claritin but had to titrate up very slowly. I think you are right that they are only another band aid really....you have to start at the mast cells themselves rather than just managing the symptoms. Even on the H1 and H2 I am still struggling which tells me that histamine release can't be my only problem. Is the quercertin just a supplement? I would try the nasal crom but it is so expensive and I have no drug coverage

[diamondcut]

Just to add the same, i have given up on H1's. Tried about 7/8 in the end and just no matter how small the amount it will not work for me. I have the Quercitin in the draw to start soon and can tak Nasalcorm no problems. Hope this helps anyone else.

[issie]

Quercetin is a supplement, a bioflavonoid. You should attempt to get it from a non-citrus source. I'm using KAL brand right now.

Nasal Crom from Wal-Mart is about $10.00 - which I don't think is bad. I have also put it into a hypoallerginic cream and used it for itching and issues with the skin and find that it helps that too.

Issie

[spinner]

Once again, to belabor the point, im not advocating any particular doctor, and im NOT a patient of cheney, nor do i think he specializes in POTS.

The point is that all of us find individualized help with various lifestyle and pinpointed drug combinations and that Cheneys work revolved around histamine blockers, which is discussed at great length here.

In the end, since we're not giving medical advice, we're each simply relating our own story of things that work for us, and us only, and that trio of meds helped ME. To argue against it would be me like me saying whatever youre using cant possibly be helping you with your pots since I just happen to know more than you do which would be ridiculous.

[Dizzysillyak]

Hi spinner,

Sorry, I guess I didn't explain this very well. I take klonopin for seizures and myoclonus so I know how it works.

It does nothing for my allergies tho. But I'm not going into fight or flight mde when my throat swells

either. My dd has anaphylaxus so I'm familiar with how to treat this. We realized a year or so after this started that

Benadryl would stop her reaction most of the time if given soon enough. Same goes for me.

We also realized how important is was to minimize our emotional responses to her problem. Living

in fear of another episode kept us in an unhealthy state of mind. Granted it took me a very long

time to learn how to stay calm when she couldn't breath. The first time was very traumatic.

At this point, I'd be

panicking if an epi pen didn't work and i couldn't dial 911 but so far, kow, that hasn't happened.

In the article you posted, Cheney didn't mention how effective it was to get excitotoxins out of your diet.

I would hope that if he had this condition, he'd have realized how important that was. I can't imagine

his patients not telling him this tho.

I only saw doxepin mentioned for allergies. Once again, he's using a drug that would sedate patients.

Personally, the sedating antihistamines make my oi worse. Wal-zyr is helping my oi tho.

Tc .. D