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Alex, This is a well known article among CFS patients, and the doctors commenting are all leading CFS experts, and yes, the article is specific to CFS patients. I personally find the comments by the doctors to be more compelling than the survey. I didn't participate in this survey, and can't guess as to what cross section of people did. This patient is taking what's considered a MASSIVE dose. 3mg a day is LOT. (Dr. Klimas, my current CFS doctor points this out in her commentary in this article.) Quoting Dr. Bateman from the article: Clonazepam, like any other drug, it neither Evil nor Good. One must simply learn about how the drug works and use it with expert guidance. Indeed! I've taken 1.5 mg for 20 years, and have never developed a tolerance issue. But everyone is different. I think that's key. Also, different people have very different variables for developing 'dependence' or addiction. Some people develop addictive behaviors to all kinds of things...Food, drugs, internet habits, (including forums) and just about anything. So each person much know their own strengths and weaknesses in terms of medication. We need good guidance from doctors but we also have to be aware of our own nature, and biologic strengths and weaknesses. K. jay, am glad you discovered that Klonopin was not a good fit for you, and glad you're satisfied with not taking it. As a CFS patient, I've had a different experience. Klonopin was prescribed to me for over ten years by a Mayo doctor for CFS when I stopped seeing Dr. Cheney (when he stopped taking insurance.) We all are different, and some of us have illnesses and conditions in addition to pots alone, and are balancing treatments to achieve optimal health. My attitude toward all medication is that if you can do without it, don't take it. Best,K

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Hi Sarah, Am glad you've had a good experience with Ativan. Both Klonopin and Ativan are benzodiazepines but they are very different animals. Klonopin is an anti-seizure medication. Ativan is an anti-anxiety medication. Both medications (like most meds) have off label uses. I don't have experience with Ativan but years ago had a script for Xanax (also a benzo) and it made me feel 'drugged' but everyone is different. Am glad it's helping you. Yes, Clonazepam is the generic for Klonopin. Dr. Cheney was stating that he feels the brand Klonopin works better than the generic. I used to take Klonopin but switched to Clonazepam when my insurance changed. In my experience Klonopin is the stronger of the two. Many people notice a profound difference between brand medications and their generic form. (Those were not my statements regarding Klonopin, I was quoting Dr. Cheney.) I notice such an extreme difference between Zanaflex and the generic that I pay over 125.00 out of pocket for the brand. In the U.S. controlled substances are 'scheduled'. Narcotics are considered Shedule I. Benzos are Shedule IV. Shedule IV drugs can be phoned in by a doctor, unlike Schedule 1 drugs, (which include opiates), and Schedule IV drugs can be refilled 5 times in a 6 month period. Tramadol is also a Shedule IV drug in some states. Another Schedule IV drug is an antidiaarheal drug called Difenoxin, so go figure. Schedule I drugs are very heavily monitored in the state where I live, (because of so many pill mills) and a recent news story tells of people who need pain medication driving to dozens of pharmacies who will not fill their scripts. Pharmacies are being scrutinized that heavily. Schedule IV drugs are not monitored that I've noticed. I've had to get six months at a time before when I was going overseas for a long period, and it was a non-issue to get that much at one time. Glad you're getting some relief with Ativan. I think everyone is different when it comes to benzos. I don't discount peoples negative experience, but Klonopin/Clonazapam was and continues to be life changing for my CFS.

LDN is prescribed to CFS patients primarily as an immune modulator. Very specifically it is capable of shifting the immune system from being TH 2 dominant to TH 1 dominant. It can also help some people with sleep and pain. I had a horrible reaction to it. This is not something to be taken lightly. I've noticed that in the CFS community the people that seem to tolerate it well have not been sick as long and are generally on the 'less sick' end of the spectrum. CFS is a spectrum illness. Like MS, some people are only mildly affected while others are completely debilitated by it. Dr. Cheney always has said, 'The longer you're sick with CFS, the longer you'll be sick'....Meaning that if you can begin some of the immune modulators early, (and there are several), then you'll have a much better chance at keeping the illness from progressing. Good luck with LDN. As a tip it's generally recommended to start at a very low dose and work up slowly. Also beware of who compounds it. Some people without insurance are getting LDN through the mail from India. I wouldn't go that route.

Good luck with your shingles. I get them several times a year, and have for decades. What anti-viral are you taking? I take Valacyclovir. 1000 mg every every 8 hours. If I catch mine quickly the anti-viral helps a lot with the pain. I've also used Blistex. The kind sold in a little tube for cold sores. There is an prescription cloth pad called a LIdoderm patch that people swear by for shingles. I've used Flector patches, but not when the skin is broken. Good luck, hope you get some relief.

Dr. Cheney states: 15. KlonopinKlonopin or Clonazepam is a sedative hypnotic of the benzodiazepine class. Klonopin was first approved for use in children as an anti-seizure drug. It raises the threshold for neuronal depolarization and is therefore inherently neuroprotective. It is used in CFS for sleep induction and has interesting additional properties as an indirect antioxidant through receptor binding within the mitochondria that reduces RIRR (ROS Induced Release of ROS) by the mitochondria. Klonopin seems to work better then Clonazepam. So Klonopin is inherently neuroprotective, As some of you may or may not know, Dr. Cheney had a heart transplant a number of years ago, and has a great deal of expertise in the treatment of POTS, as well as CFS. He has spoken and written a great deal about heart issues in CFS patients. http://www.cheneyclinic.com/glossary

Please read and watch this short video by Dr Paul Cheney here. Klonopin is his first line of defense with this disease. http://www.cheneyclinic.com/about

Spinner, Am glad Klonopin is helping you. As a patient with CFS and now hyper pots, it's helped me too. Please allow me to make clear up a misconception about Dr. Cheney. He is not considered a FM pioneer as you suggested, he is in fact a CFS pioneer. CFS and FM are not the same, but often confused by MD's as being 'same'. I was a patient of Dr, Cheney for 15 years, so please allow me to explain the difference between CFS and FM. While I can't begin to explain all the differences, I'll explain it simply. CFS is a complex disease that is both immunologic and neurologic. FM is neither of these. Some people have both, but FM has gained wider acceptance in the medical community because it does not involve the complicated neuro-immune involvement. This is not to say that some patients don't have both CFS and FM, but they are separate entities. Dr, Cheney certainly knows about FM and treats it, but it's CFS that he's not only passionate about but has championed, and made himself known for. You're correct that he prescribes Klonopin as one of his primary meds against CFS, and he prescribed it to me decades ago. I've been on it since. While some people feel it's 'addictive' I think that's an individual component. I've been on the precise same dose for decades, and have not needed to increase my dose to maintain the same benefit. Dr. Cheney was interviewed and asked if he were on a desert island, 'What 3 medications for CFS would he take with him'. Klonopin was first and magnesium was also in the top three. Magnesium is essential for sleep and also muscle function. I was also prescribed Klonopin for my CFS when I switched from Dr Cheney to a Mayo Jax doctor. It's very well known drug for controlling pain without being addictive in the sense that opioids are addictive. It's a complicated function, but Klonopin is not a scheduled drug. Just needed to share that Dr. Cheney is first and foremost a CFS expert, and very much a player in the ongoing investigation of neuro-immune involvement in CFS, and also that Klonopin is a well recognized drug and very safe drug for pain management. Am glad it's helping you, and am not at all surprised a Mayo doctor prescribed it for you. Wishing you the best, K

Recently I was suffering from severe pain in my calf. It lasted for days and I was unable to walk without a limp. On the third day of this I happened to read an article in a magazine published by a chain of hospitals in the state I live in. Under an extensive article called 'Ladies First' it says 'What are the 4 warning signs women shouldn't ignore? Am now copying verbatim: Number One: Pain and swelling in Calf LIkely cause: pulled muscle Worst-case scenario: Blood clot in the leg (Copying the article below:) When you sit for long periods -whether it's on your way to a dream vacation or glued to your desk- blood pools in your lower legs and can form a clot. When it's large enough, it can block a vein in your leg, producing pain and swelling. "Unfortunately the first thing you'll probably want to do- rub your leg- is the worst thing,' says Dr. X a vascular surgeon with Y Hospital Cardiovascular Institute. "It can send a big clot running up to your lung, where it can be very harmful." When to Act: If symptoms happen suddenly, immediately call your doctor or go to the emergency department. You'll have a sonogram on your legs to find the presence of blood clots and a CT scan of your chest to make sure it hasn't moved to your lungs. If you have a clot, you'll need to take blood thinners-sometimes for up to a year-to dissolve it. This article was alarming to me. I'd had serious calf pain for days, but I decided to wait one more day. I'd upped my Magnesium the last few days, and that day I added more. I also ate several bananas for the potassium, and drank even more Smart Water. The next day the pain started to subside, and now it's gone. But this article was of great interest to me and I hope it helps other pots patients to be aware of this kind of pain. Don't rub it, and be very concerned if there's swelling accompanying the pain. Best, K

This is a good and very simple article explaining IVIG and how it's used, and how works. What I found most interesting is how many 'off label' uses there are for IVIG. http://potsgrrl.blogspot.com/2011/10/how-could-ivig-help-pots.html This may be simplistic for people who have studied IVIG, but may help those who are just learning about it. How much are people in the US paying for treatment? With insurance, what's the average co-pay? It was recommended to me by Dr. Klimas for immune deficiencies but I've put it off for now. Good luck with your IVIG treatment Alex! Best, K

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Issie, I agree. 'The diet thing' is one of the most powerful things any of us can do for ourselves. Much of illness is outside our control, but diet is something that we can control. It takes determination, dedication, and education, but it's worth it. Diet, meditation, and moving your body as much as you can goes a long way in helping dysautonomia and most illnesses. Best, K

Thank you for the prayers Kelly, I'm sending prayers back to you. Enjoy your time in Sedona! Relax88, am glad you've benefited form the Deepak Chopra meditations. Thank you for sharing the title of the book. I started practicing meditation and breathing techniques, as well as visualization many years ago, and I agree with you. It's incredibly helpful. It takes practice. In the beginning it's normal for your mind to wander a bit, but I try to be kind to myself when that happens, and refocus and carry on. I find it especially helpful with sleep when I need to quiet my mind. I use a mantra combined with a simple 4 count breathing exercise. Lots of free videos online that teach very simple techniques for this. I don't have a link handy but it you google Deepak Chopra, you'll find he has many free meditations on line. He has a very peaceful voice, and it's a lot like bio-feedback. He focuses on breath, and quieting the mind with meditation. About a decade ago we had a surgeon general in the U.S. who claimed that ten minutes of mediation daily is the most powerful thing one can do for their health. That amazed and impressed me. Still haven't read this particular downloaded book, but it looks interesting. I hear about free downloads through a network of people I've known for years, people who have CFS. Have shared all of the free download books on Dinet. This is the third one in the last year, so I'll continue to share when I hear of one. Best, K

Carrie, I agree completely. With one exception. And that's about going sugar free. Watch this 60 minutes show about sugar! http://www.cbsnews.com/video/watch/?id=7403942n I gave up sugar over 7 years ago, and it's been pretty amazing! Don't use stevia or any diet sugars...No sugars with the exception of fruit. Think this 60 minutes will surprise people...A lot. Best, K

Hi All, Wanted to share this with everyone. Today, Sunday June 16 is the last day to download a free book on Amazon called Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, Summer Devotionshttp://www.amazon.com/Broken-Body-Wounded-Spirit-ebook/dp/B00D665FPK/ref=sr_1_3?ie=UTF8&qid=1370371841&sr=8-3&keywords=broken+body,+wounded+spirit I've just downloaded it, but have not lead had a chance to read it. It was recommended. Best, K

Welcome Chris, Am sorry for your experience and the loss of your professional career. Ugh...Like so many here. How did Dr. Barboi, (he sounds like a fine doctor) dx you as hyperadrenegic? Just curious. Your long, drawn out illness being finally dx is awful, (though not unusual), and I'm sorry for your pain, but it's satisfying to have a dx, as difficult as it is. Thank you for sharing. Best, K

I live in the deep south, and have had severe heat intolerance since I was dx with CFS several decades ago. Regardless of my activities I did not sweat. On my best days I could horseback ride for hours and be as dry as a bone. Never ever sweated and never wore deodorant...ever. Once I was dx with pots, that fact very slowly changed. Hyperadrenergic pots comes on gradually, and now I have difficulty controlling my body temperature, and now have extreme 'sweats' when I least expect them. It's getting a bit better with Methyldopa, (as is my sleep). but sweating and ability to control body temp has gone completely haywire. Hyper pots is very difficult and the sweats, inability to control body temp, and insomnia are all a part of excessive sympathetic excess, and high norepinephrne (NE). Best, K

Have you had a standing catecholamine test done? Your symptoms go with both MCAS as well as as a hyperadrenergic state. Often hyperadrenergic pots and MCAS go together. Hand in hand, particularly with a high NE you'll have a MCAS disorder. Worth having catecholamine testing done to start. If your NE (norepinephrine) is high, I'd recommend MCAS testing. Best, K

I've had several 'false' positive ANA tests. So have other people I know who are in perfect health. If your 'rheumo' is not concerned, that's a good sign. Rheumatologists do more ANA tests than any other specialist. Hope yours is a false positive. Very common. Best, K

Issie, Great point about Alpha Lipoic being high in sulphur! Such an important point for many of us, (I'm so allergic), and didn't pick up on that. Thanks for pointing it out. Best, K

Issie, It's great you're having a good result from grapefruit seed extract! I looked at it and the only thing that concerns me appears to be related to a well known caution about eating grapefruit while taking other medications. Googled 'grapefruit seed side effects.' There are a number of sites. The consistant thing I found on these sites is this. Pasting: Grapefruit can inhibit a digestive enzyme in your intestine, increasing the absorption rate of other drugs you are taking, as well as their effects. Read more: Grapefruit Seed Extract Side Effects | eHow http://www.ehow.com/facts_5562334_grapefruit-seed-extract-side-effects.html#ixzz2VUvtwPOT On the other hand grapefruit seed is being researched as a potent anti-fungal and more. I think it would be wise to talk with a pharmacist before starting it. My main concern would be having the medications I'm currently taking not work well for the reason quoted above. Have you found anything that states grapefruit seed extract is different than eating grapefruit? (Have often times been warned not to eat grapefruit when taking a certain medications.) (Not sure why type font is erratic, with the exception of Bold.)? Interesting about GSE research and anti-fungal properties. It may be that some with pots also have Candida? It seems reasonable that it could co-exist. Glad you're feeling better! Best, K

Mitochochondrial dysfunction is and has been a primary aspect of CFS known for decades. Am not saying it's the cause or the result of CFS but an inability to produce ATP has been a known aspect of CFS since the mid 1980's. It's been one of Dr. Cheney's primary topics since that time, (I was a patient of Dr. Cheney's for 15 years). This is very specific to CFS, (not suggesting it's not also in pots patients as well), but the research on this has been done 'en mass' in CFS patients. But one of many, many articles on mito dysfunction and CFS. http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

Flatout, Quoting from your post: we are going to make the trip to Mayo. My cardio hopes that when they see me, they'll see just how unusual I am and go from there. He thinks it's a gamble but worht it. I think that's a wise decision. Think you'll be well cared for and I do think 'it's worth the gamble' as you say. Don NOT believe they will examine you, find hyperadrenergic pots, and then not do a through evaluation. The pots clinic is indeed separate from the pain rehab clinic. It's a 5 day process for pots patients, and Mayo only takes a specific number of pots patients through the pots clinic per week. Good luck Flatout. Thank you for sharing, and I wish you the very best, K

Always a great topic. Giving up all sugar years ago has been profound for me...No cheating. I eat fruit though. No 'fake' sugars or stevia either. I was a vegetarian for 15 years, but didn't feel 'better'. Am lucky to have a Whole Foods 2 miles from our house, so my husband and I eat clean 'whole' foods. No junk, nothing out of a box or can. (Not quite true, rice crackers are out of a box, but the ingredients are very limited.) Organic fruits and veggies and only meat that is organic also. I've read articles recently about gluten free, and while I don't have a link handy I did read that going gluten free can help with 'neurologic issues'. Even my cardiologist recommended it. Have been very symptomatic with hyper pots, so have not wanted to start anything new in terms of diet, but I'm now very 'aware' of gluten and switched to an english muffin made from corn meal. Little things, but I do still eat gluten. As for carbs...for me they seem okay in moderation. I don't notice crashing from carbs. I tend to eat small meals. I read that one of the symptoms of pots is 'being quickly satiated'...I thought, 'wow, that's me.' In a restaurant I never finish more than half of my meal. I get full quickly. Am very sensitive to people who struggle with their weight, but it seems that a lot of pots patients are naturally thin. Does anyone know why this is? It seems a lot of us share the same body type. Changing eating habits can be difficult at first, but once you change a habit, it's odd because you start to crave healthy food. I've become so sensitive to fruits and veggies. I can touch a grape and tell if it's organic. They're so smooth because they haven't been sprayed with chemicals. Also, for people who have a Vitamix or one of the other brands like Vitamix, green smoothies are really tasty. I add kale, banana, blueberries, apples, and ice. Most people add pineapple to the mix, but pineapple and watermelon are extremely high on the glycemic index, so I avoid both. (Stole this recipe from the Whole Foods smoothie bar)... Thank you for sharing your diets, and Carrie, your research is always well done and a pleasure to read. Best, K

Found this about caffeine on the Dinet 'What To Avoid' page... Just read this and thought other hyper pots patients might find it interesting. Pasting: "However, caffeine also increases the length of time that catecholamines remain active and this can be detrimental to those with a hyperadrenergic state. POTS patients should check with their doctor before taking over-the-counter products. An 'ah-hah' moment for me. Used to drink coffee daily, but in the last year stopped drinking it almost exclusively. Just stopped for no reason other than it didn't 'feel' good anymore, but never made the connection. Had a cup of coffee this morning, and I felt far worse than normal all day. It's an interesting point. I know caffeine helps some pots patients with vasoconstriction.