megan2

Okay, my opinion on nausea meds: 1) Zofran--8 mg ODT, it is important that they are the dissolvable ODT kind...do not bother with the tablets! I would not go above 8 mg...they tried to keep increasing my dosage at one point when Zofran stopped being effective...increasing beyond a certain point can be dangerous...using in high amounts for chemotherapy is different because they use a high amount and then none at all for day....in your son's case it would be chronic use. 2) Kytril Patch (Sancusco) If Zofran is sort of working but not well enough, it might be worth it to try Kytril a similar med, in patch form. However, keep in mind that the patch is expensive. 3) Domperidone can be very useful, and is generally safer than Reglan. HOWEVER, make sure you check with a cardiologist. Dangerous QT prolongation can occur and is why I had to stop taking domperidone..although domperidone was fairly effective for me. 4) Benadryl--will worsen motility big time... but can be effective for nausea, and is safe. 5) Anzemet--wouldn't bother with if Zofran and Kytril didn't work. It was even more expensive, and not that effective. 6) Klonopin--.125-.25 dissolvable wafers can be VERY effective for nausea (can use Ativan instead, although in my opinion Ativan has more side effects) 7) Emend--this is what I'm going to try next...no idea about it yet, but I have been told that it is extremely effective although expensive 8) Marinol--haven't heard too many good things, but haven't tried it myself 9) Eythromycin in a VERY small dose 10) Phenergan, Compazine...these are older, sedating and can have nasty side effects, however for some people can be extremely helpful.

I couldn't read for awhile either, but when they gave me l-carnitine tablets, I found I could read some again. Worth a shot. You can buy them OTC. PM me with questions.

Thanks! How did you decide to get a muscle biopsy? I've been told they're only informative 50% of the time of dysautonomia related mitochondrial disease...so I'm confused about whether I should bother getting one or not.

Hi everyone, I'm going to be heading to the Cleveland Clinic next month to see Dr. Cohen for an evaluation for mitochondrial disease. I was wondering if any of you have seen him, or have ventured down this path...what have been your experiences? Thanks!

Ptosis is a classic sign of mitochondrial disease. I think I remember you mentioning something about a family history of cardiomyopathy (or was that someone else)? Good mito doctors are hard to come by, even harder than finding a good POTS doctor, so you have the option of trying to see a mito doctor, or just attempting treatment. If you need more info on dosages for the mito cocktail I can help, just PM me. I understand wanting to attribute symptoms to POTS, and that might not be false. Some patients with mito-like symptoms end up having POTS and others end up having mito. It is impossible to differentiate between the two clinically. Good luck and feel better!

I have junior merits chair. It is smaller than your traditional power wheelchair, which makes it more portable. I can't lift it but my dad can lift it in and out of the car. In order for insurance to cover a power wheelchair you must meet the following criteria (This holds true for most insurance companies)... -You must be bedbound without one. Insurance does not approve wheelchairs for quality of life. -You must be unable to operate a manual chair. In my case, I was unable to operate a manual chair because of ehlers danlos syndrome and joint dislocations. I love my wheelchair. It has given me my life back. I'm still really sick, but it has made such a big difference in what I am able to do. You also need your someone to complete a wheelchair assessment. For me, I wasn't bedbound all the time, but I was bedbound on some days, and my doctor felt that was enough...in my letter of medical necessity he just wrote that I would be bedbound without it... The best way to go about getting a chair is to work with a durable medical equipment provider (go on your insurance's website and find one that they accept). The durable medical equipment company will generally go out of their way to help you get approved--so they make money! If you don't qualify for a chair and your doctor is not willing to write a letter of medical necessity, then you will have to try to find a chair that someone no longer needs. MDA has some resources...but in general, wheelchairs are hard to come by... Good luck! PM me if you have any questions...I know I had plenty when I was going through the process!

Ugh. I am so conflicted. I don't want to get an infection at the same time I don't know how to continue going about my life without a port. I've been hospitalized twice this month for severe dehydration (within an hour I can become dehydrated due to crazy intense vomiting), and the only thing they can do to stabilize me is D10 fluids. I've spent so much time in the hospital, and I just don't want to live in the hospital anymore. At the same time, I'm not keen about surgery, and the risk of sepsis scares me. I keep making up my mind that I'm going to get a port and then I hear about another one of my POTS friends whose port got infected and I no longer know what to make of it. I want to get home care...and then be able to do the infusions that way, but not at the risk of my life. When is it the last resort? Cause right now I feel like we're at the last resort...but technically we're not...I could just spend half my life in the hospital.... Home care was wiling to do peripherals for awhile, but now refuse, they said I have to get a PICC or port. These infusions aren't for maintenance, but rather for dehydration and crisis...severe dysautonomia spells with heart rates up to the 240s...

Cardiomyopathy is often associated with mitochondrial disease, which can cause POTS/dysautonomia. Migraine headaches are another family tree factor suggestive of mitochondrial disease.

I have tried lots of meds, SSRIs and benzos included. I would say to try an SSRI first to see how your body handles it, but be very careful to start at the lowest dose possible and SLOWLY increase. For me, I tried Lexapro (it's supposed to have less side effects than some of the others), but it was awful. I barely lasted a couple of days. I recently tried Ativan, 0.5 mg twice a day, and it has been incredible. I have gone from bedbound, and almost hospitalization (was so nauseous couldn't keep anything down), and now a couple days of later, am going about my life. I cannot endorse benzos because of the risk for dependence, but for me, it's definitely worth it.

I started taking Florinef a month ago. I started out taking .1 mg a day, but after about two weeks I cut it down to .05 mg a day because I was having too many side effects. The .05 mg is not really working effectively anymore since I got most of the .1 out of my system from before. I started alternating .1 mg with .05 mg. I've noticed that my heart rate is much higher when I increase the dosage of Florinef. Anybody else experience a higher heart rate with Florinef? My resting heart rate is usually around 50, now its 70.

There's something called Nuun that you can try. If you go on their website, there's a list of stores that sell it. I know REI sells it if there's one by you. It comes with 12 tabs in a tube, one tab for about 1/2 a liter of water. It has more sodium than gatorade and very few calories. It's not as sweet as Gatorade but I find that it tastes okay. It's about the same price as the Gatorade G2 I buy at Costco. ($6.50 for one tube)

Thanks! Sunfish--you are really knowledgeable. I haven't had a motility study done but I suspect that that's part of my problem. When the nausea is really severe though, I think that's from my migraines. I'm on Zofran as needed, but I end up needing it everyday. I don't think anyone is overly concerned about it because they are letting me keep taking it, but they're not happy about it either. Mostly, it just keeps my nausea from becoming really bad, it doesn't actually get rid of it. I'm going to try the ReliefBand. It's expensive, but they said I can return it if it doesn't work. If it doesn't work, I think then they may let me try domperidone.

Hi everyone, I have been struggling with constant nausea for awhile now. I'm currently on zofran and it has been working fairly well, but it's not something my pcp wants me to be taking everyday. He has been considering domperidone but seems reluctant. I did a search and it seems that many of you have tried those medications and have been using them awhile. So is it okay for me to be on those medications for a prolonged amount of time? My pcp spoke to a GI who suggested ReliefBand. Anyone tried this and have success with it?