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Chronic illness is difficult for everyone, but I think it's especially cruel when it affects children or teens. Have hope. You're young and you don't know what life has in store for you. I don't have advice but I do have a special hope for teens and young people in their twenties with chronic illness. Sending you kind wishes and hoping for good things for you, K

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Made me smile...Thx

I Googled 'saline bags for IV' and the first hit was this, and they sell it for 1.99 a bag. Link I sent wasn't 'hot'. This one is Rachel. Good luck! http://www.bpmedicalsupplies.com/category.sc?categoryId=49

Rachel, When we bought it by the case, we actually used a small independent pharmacy. Two of them in fact. This was almost 10 years ago, but we used 1 large bag every 2 days for our dog. He got 2 cups of saline per day, and 1 bag lasted 2 days. We didn't buy at Costco or Sam's but I mentioned them because for people without insurance I've heard Costco has the best prices and you don't have to be a member to use their pharmacy. I've never used Costco or Sam's pharmacy. My memory is the small 'mom and pop' pharmacies were more willing to help. Saline is very inexpensive, and I think because we were buying it by the case for over a year and a half they were willing to help. They also realized we had a real need, as you do to. Perhaps you could Google smaller pharmacies in your town and telephone them and ask. It may be that bigger pharmacies 'don't want to be bothered' although my local Walgreen's even does compounding of bio-identical hormones now at a fraction of the price of compounding pharmacies. Because I was able to buy by the case for a dog from two pharmacies, I feel certain you'll be able to find a pharmacy to help you. Might involve some calling around, but maybe by doing a few calls a day, you can do this. I Googled 'saline bags for IV' and the first hit was this, and they sell it for 1.99 a bag. Of course they're too far away, but it shows you how cheap saline is! /www.bpmedicalsupplies.com/category.sc?categoryId=49 Perhaps buying it online is the way to go if you can get a deal on shipping! Best Rachel, K

Because you have to register, and it takes a bit of digging to get to the mediation, I'll post the first one. Each day the meditation is about 17 minutes long, all done by Deepak Chopra. Today's is called 'I commit to living perfect health' http://www.chopracentermeditation.com/bestsellers/ProgramPage.aspx?bookid=178&id=7741

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Rachel, 75.00 per bag of saline? We were paying 30 some dollars for a case of saline when we used it for our dog. We bought it from a local pharmacy, (I shopped around, as the price varied)....We hung the bad and administered ourselves. We didn't even need a script. I just explained we had a dog with juvenile renal disease, and they understood. Maybe you could call Costco, (you don't have to be a Costco member to use the Costco pharmacy), find out their cost for a case and it might be worth a drive out of town to buy cases at a Costco or another pharmacy. Most pharmacies have to order saline, they don't keep it in stock. I'm due to have a picc line put in, but am planning to have the infusions done at my local hospital when I start cardio therapy. Good luck, I hope you find a way to make this doable! I think you will.

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Am a huge proponent and believer in the power of the mind. When I first got sick with CFS in the 1980's, I bought tapes on how to visualize and meditate. I also had biofeedback which is amazing when done by someone experienced. A huge part of how all of these practices work is that it causes the brain to enter a state where it produces alpha waves. This is a profoundly relaxing and healthy state for the mind and body. To this day I use mediation combined with breathing techniques to help me with sleep and pain daily. It's powerful. There is a lot of useful information on the internet to help learn breathing, meditation techniques and visualization. I've used these techniques for years to deal with pain, sleep, being in the hospital before surgery and as an everyday benefit. Meditation takes a bit of practice, it's normal for your mind to wander in the beginning when you're learning. When combined with very simple breathing technique it's an amazing modality. In the eastern world, where mediation is a part of the culture, it's extraordinary how much peace of mind, calm, and mindfulness these people carry within. Since pots involves the sympathetic aspect of the autonomic nervous system, it makes even more sense to have additional tools to deal with the 'fight or flight' aspects. Dysautonomia also involves the amygdala. The amygdala is part of the limbic system, but it sends impulses to the hypothalamus for activation of the sympathetic nervous system. The new Mayo paper, as well as others on dysautonomia all mention the amygdala as a part of pots. Many people with chronic illness also deal with additional stress concerning friends and family. Much of this stress is longterm and is not something that can be controlled or changed by patients. Mediation, breathing techniques, and visualization can be very effective for this. Am passionate about this topic, as it's helped me for years. It's free, it's something that can be developed and something no one can take it away from you. Best, K

That link didn't work. Opened the PDF link and found a diagram that is much much larger than in the full text version. Interesting. Did you see this Bebe? PDF version, (hope the link works) http://download.journals.elsevierhealth.com/pdfs/journals/0025-6196/PIIS0025619612008968.pdf

Bebe, I agree. Think this article is very good. It's long, and I found that printing it out, and reading it very carefully was helpful. Didn't see the options. Here's the link to the full article. Found the link to the full article after you pointed to where it was. (My cognitive dysfunction...Sounds like the name of a documentary of the side effects of pots.) http://www.mayoclinicproceedings.org/article/S0025-6196(12)00896-8/fulltext

The above Mayo article is an 'abstract' of a the paper Issie posted the link it in its entirety earlier this year. I agree that if I only read the abstract I would find this concerning. The abstract of the article and the entire article are very different. I printed the entire article out and read it carefully with a highlighter, and it's actually very good. I've shared it with several doctors. Issie, do you still have the link to the entire article?

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I once read a symptom of pots was being 'easily satiated'. That's how I eat. I'm hungry but after a few bites I'm full. So was thin when I was dx with pots and have continued to be. I don't have a big appetite. So didn't loose weight but haven't gained any.

LDN is used as an immune modulator in CFS. The reason it's used is to 'try' and shift the immune system from being T2 dominant to T1 dominant. If you want to know more about T2 to T1 shifters, here's a link about it written by Dr. Cheney. He was my doctor for over 15 years. Lots and lots more to know about T1 and T2, but here's a primer. http://www.anapsid.org/cnd/diagnosis/cheneyis.html LDN is also used by MS patients. The 'guru' of LDN compounding is Skip at Skips Pharmacy in Coral Gables, He ships. (LDN needs to be made by a compounding pharmacy) I was prescribed LDN some time ago by a CFS immunologist. I started at a fraction of the dose, and had a horrible reaction. The reaction was both neurologic and immune based. A few people with CFS do well with LDN, some get no response, and fewer have a dramatic negative event like I did. It kicked up a major neurologic and immunologic disease having nothing to do with pots. I had pots when it was dx., but in no way was it dx for pots or suggested to help pots. (The same doctor who dx my pots prescribed LDN for my CFS.) So if you get a doctor to prescribe this I would recommend starting at a very small dose and would recommend having it compounded by Skips Pharmacy. Someone said, 'it can't hurt to try it'... As with most medications there can be risk.

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Buster, Am glad Methyldopa lowered your BP and not interfering with heart function. I have low BP, and had a concern about taking Methyldopa. It seemed counter-intuitive to me to take a medication for high BP when my BP is low. Oddly, it hasn't lowered mine. Am taking 250 mg three times a day. Could NOT tolerate beta blockers as they lowered by BP to an extreme (80 over 40), and they're not for hyper pots anyway. (They were prescribed before it was determined that I had hyper pots.) So it's a bit of an enigma to me that Methyldopa does not lower my BP. Definitely has a powerful impact on the sympathetic excess though. Not only has it dramatically helped with sleep, but also with surges, and cold sweats. Have only been on it for 2 and a half weeks, but it's been amazing thus far. Now if it would only help with cognitive function!

Batik, Ugg...What a nightmare. I also have the extreme hypersensitivity to noise and light. At Radio Shack they sell earphones for people who fly a lot. I know people who swear by them, as they supposedly cut out all ambient sound. They're expensive...I think they're about 150.00 They ear covers are large but fairly flat with a band that fits over your head (hairband style). Good luck with this.

Great news Kris! This has been a journey, and you finally have a doctor who is working with you and for you. Congrats. I remember you were on a deadline. Does this mean you'll be able to go back to work on schedule? One of the things I miss most is riding! Hope you can continue to do so for a long, long time. I didn't have to stop because of hyper pots, but because of another illness. Keep us posted on your progress.