dsdmom

Ask the anesthesiologist about using Dexmedetomidine. My doc says she has had dys patients have to have surgery and relapse w/ normal anesthesia but do great with Dexmedetomidine. It's newer though and some docs may not be experienced with it. Another option is to check this link: http://www.masscfids.org/treatment/surgery-a-anesthesia/6 It's recommendations for patients with CFS (and dys) who are getting surgery.

I'e never heard the term "treatment resistant" in regards to POTS but c'mon, I don't think much about POTS or dysautonomia is actually 'treatable.' Everybody is different and responds differently. However, there ARE lots of things to try - now I'm 4 years in and have tried SEVERAL things but have a great dr and I'm STILL trying new things. Of course they get more intense once you've used up the 'basic' options. Anyway, I wouldn't let your dr tell you there are no other options - one must have hope. Of course this also depends on if you have hypo or hypertension: Have you tried: (and I know you tried a couple of these but I'm just listing everythin I can think of off the top of my head): beta blockers florinef salt tabs increased fluids compression stockings* midodrine mestinon* ssri's IV saline infusions a couple times a week* if you have hypotension: adderall, ritalin etc (I liked adderall a lot - VERY low dose - but got headaches from it) ivig* *are the things that I am currently using. I have tried many of the others without success. IVig is difficult to get approved by insurance but may help if you have an autoimmune issue contributing to your dysautonomia. I started 2 months ago and my neuro thought I should feel a difference already but my immunologist thinks it can take 3-6 months so we're keeping at it...and btw, I only see an immunologist because she specializes in the immunologic abnormalities (and there are a TON) in CFS, which I have come to realize I have. Also my neuro just told me that he believes that droxidopa will be approved next year for hypotension. Honestly, 4 years in I can tell you that the biggest thing that has helped is time. But it's not getting me back to where I want to be. I find the saline infusions 2x a week extremely helpful. They don't make me feel like a million bucks but I find I can do more when I get them. My immunologist, pcp and cardiologist were all on board with this but yesterday when I told my neuro I was doing it he wasn't thrilled. Told me I could get the same effect by drinking which is not entirely true. Some people's intravascular volume responds better to IV fluids. So too bad for him! Anyway I just want to say don't give up. You may have to find a new doc but maybe your doc would be open to discussing other options if you brought the to him /her.

Cordelia - let me guess, were you @ beth israel? If so I can commiserate with you on how horrible the drs are there in the autonomic department and quite full of themselves! I won't be back...

thankful, has your dr thought about checking your igg subclass? Or other immune system function? I know someone who had something similar happen and they finally figured it out. She is now on monthly ivig and hasn't been sick in 5 months.

My neuro believes mine was caused by an infection - either viral or bacterial (I was very sick when I developed dysautonomia). However, we recently started ivig to see if this helps. Surprisingly my insurance agreed to pay for this - shcoked me and I'm still scared I'm going to get a bill... One round done (5 days in a row) and now improvement yet. Going to give it a bit even thoug hit's not a ton of fun. The headaches I get are horrendous.

One prevailing theory is that some of us (that includes me) have an unbalanced th1/th2 system - leaning towards th2. This is immune system stuff - but the basics of this is that there should be a balance between the two arms (th1 and th2). When there is an imbalance, problems arise. If you are th2 dominant (seen often in CFS patients, mine was tested by Nancy Klimas in Miami) sensitivities/allergies are just a symptom of this. So what can you do? Well, there are ways to try to undo the th2 dominance. Imunovir is one drug that is supposed to help (not available in the states - has to be ordered from Cananda). I personally did not do well on Imunovir. LDn (low dose naltrexone) is another drug that is supposed to help do this as well. Alas, I didn't do well on that one either!

Everyone's different - if you are worse on the d-ribose, STOP!! I didn't do well with it - even on a very small dose. You have to find what is right for you.

I don't know if you've been following any of the studies on XMRV and other MLV's that are being done right now, but they are a family of newly discovered infectious retrovirus and have been implicated in CFS/ME. Many patients with CFS/ME also have dysautonomia/POTS. There seems to be a link (not yet proven I don't think) between these viruses and various cancers. I believe that lymphoma may be one of them. Tues & Wed of this week is the first International XMRV conference, being opened by the head of the NIH, which is very exciting. The FDA/NIH recently released their study showing MLVs in 80% of patients with CFS. I suppose the point of my post is that yes, there could be a correlation between pots and lymphoma although not enough is known yet.

Ugh - so sorry! I went through this about 3 years ago with Klonipin. It was horrible. I wasn't even taking that much. Maybe 1/2 klonopin 2x day? For 6 weeks or so. Then i started to come off it and man, talk about withdrawal! I stuck it out and it only lasted a few days and then I felt much better. Is your doc aware of what is going on? I couldn't have done it without checking in with my psychiatrist because I was so miserable and it was good to hear that I would get through it...and you will too!!

Elizabeth, Personally I think you'll be disappointed @ BIDMC but if you need testing at least you can get that done. Unfortunately there aren't a ton of choices, but I also see Novak in Worcester. The problem w/ him is that his office is IMPOSSIBLE to get a hold of in between appointments and i haven't even been able to get refills through them at times. They also have canceled appointments on me more times than I can count. So there really isn't a great solution. Although I have started seeing a cardiologist @ Newton-Wellesley at the suggestion of my pcp. He is not a dys specialist but treats several patients. He likes me to keep seeing a neurologist as well since they do see things differently and do things differently. Anyway, good luck @ BI. They think highly of themselves over there - I just wish I could as well!

Kits, Glad to see your post on this. I just tried Ritalin this week and really don't like it. Feel awful coming off it especialy - even at a super low dose. My pcp said she had better luck w/ ritalin than adderal (with her patients) but my psychiatrist told me the opposite. I suppose it is very individual but I will ask my pcp to try adderal next. What dose do you take?

Yes, POTS can be part of CFS/ME. Recognizing POTS is good so you can try treatments, but there are no cures. And be careful of drs who don't understand this connection - they wll tell you to exercise even if you feel poorly. This will NOT cure you and if you have me/cfs will make you much worse, as you are probably aware. In the meantime, are you familiar with the phoenix rising forum? You may want to check it out: http://forums.aboutmecfs.org/index.php Also, are you up to date on XMRV news? The FDA/NIH study confirming the link with CFS/ME should be out by the end of the month.

Sorry to hear about your experience but I'm also not surprised, if indeed you went to Beth Israel. I had a horrendous experience there myself and won't go back. My pcp was so angry that I had to stop her from picking up the phone to yell at them! She's had other patients go there with similar results. They tout themselves as experts but personally I do not think they are - or at least they are very closed minded. Anyway, after 4 years of this and more drs than I can count - I am onto my 3rd PCP who I realize is worth her weight in gold! Glad you have found a good one, too.

Ericka! I am so so so glad to hear that you are doing better. I know you are not healed but am thankful that you finally found docs to take care of you. I hope you continue to experience improved health!!!!!

I'm with Todd. At least in my case there's a very strong possibility I actually got sick from a blood transfusion - XMRV (still in the process of being proven). So no need to pass it on to others.

Oh Ann, My heart breaks for you and your family. I am sorry you are going through this. I don't know where you are located, but it sounds like you need to find a center that will be able to help you. Have you thought about Mayo or the Cleveland Clinic? I am not sure how these places are with pediatric dysautonomia but maybe someone else can make a suggestion. My thoughts and prayers are with your family.

I just started LDN last week - I initially started at .25mg and got a terrible headache. So I skipped a night and then restarted at .1mg. It's an extremely low dose, but I guess there are some people who take very low doses. Still dealing with headaches, some stomach issues, including pain and constipation. But trying to stick it out. I recently tried Imunovir and stopped because of headaches. I really want/need one of these immunomodulators to work since my immune system is such a wreck. Yesterday I completely overdid it - physical therapy in the morning and then a dr's appt 1.5hrs away that I went to on my own and had no nap. Today I have been very sick - feel like I have the flu, sore throat, tired, orthostatic symptoms worse. Hoping it goes away soon....but thinking I may skip tonight's LDN. The problem with LDN is that there is no real protocol that has been established. Yes, Dr. Bihari came up with some ideas but there have been no controlled studies. Some people take it every other day, some take it 2 days on, 1 day off...at various doses. So it's hard for me to figure out what I should be doing right now...think I'll call my doc tomorrow and take a break tonight.

I'd have to say I agree with you. When I first got sick I pushed myself through physical therapy and was eventually able to do quite a bit of activity - but it only helped me cope. There was no cure involved and if I took time off I very very quickly slid back to being sicker. Over time my CFS got worse and now pushing through is not an option - interestingly enough I just saw one of the top CFS docs in the country and had a battery of immune function tests done. My immune system is severely dysfunctional - almost scarily so - and so now I know that pushing through would indeed only make me sicker. But I think if you can do any activity it may help you feel better - I just don't think it is a cure.

Ernie, I am so glad that you have updated us - I have thought about you and wondered how you were doing. What do you think helped with your recovery?

It may be just your reaction to prilosec. Everybody reacts differently - even to those types of drugs. I can't take pepcid because it gives me palpitations and I can't touch Aciphex because it makes me feel like I can't breathe. But I"m fine on protonix. So maybe you just need to try some other ones?

Florinef is a mineralocorticoid, not a glucocorticoid. Prednisone is a glucocorticoid although it also has some mineralocorticoid characteristics as well. I tried florinef a few years ago and did not do well with it (felt like I was having an out of body experience) but then was put on prednisone for something else and didn't have those problems at all. I am being put back on florinef this weekend because I am trying to come off the prednisone and having a very difficlut time - one of my doctors thinks that the fluid shift is causing problems and adding in a little more mineralocorticoid may help. I'll let you know how it goes. Did anybody else have a hard time building up to their current dose and what is your current dose?

I actually would consider the 15mg a pretty big jump. I go up by 1mg at a time in the liquid form. A 15mg jump would do me in!

Erika So sorry to hear that you are back home. I mean I'm glad you aren't in the hospital but am sorry that you aren't healed Could you go to the ER at this other hospital and try to be admitted that way? Why wouldn't they take you as an in-patient? Are there any other hospitals near by you could try?

I use a very low dose (.1mg) of a compounded testosterone cream. I am 33 years old and had a partial hysterectomy 3.5 years ago. So even though I still have my ovaries and my hormones are supposedly ok, my testosterone levels are extremely low and I was complaining about ZERO sex drive. It does help with that. I can't say it helps my dys symptoms. I do have a prescription for a low dose estrogen patch to take just around my 'period' to see if it helps with symptoms but i haven't yet.

I've used it daily for 2 years now. No problems at all. No cramping, no side effects at all. Just does what it's supposed to! I am super sensitive to any new drugs but this one was no problem. we are all different though. the great thing about miralax though is that since it is a powder you can titrate up as slowly as you want if that makes you more comfortable. start with a whisper and build from there...