Noreen

I am sorry for your pain. Your frustration with the medical system is certainly not unique and through this forum we learn that it is not even limited to one country or system. It is so very difficult when you are at the bottom to see any possible way out or light at the end of the tunnel that isn't an oncoming train. The members of this forum understand how difficult dysautonomia can be. If you read the recent posts where Ernie checked back in to let everyone know how she was doing you will see it is possible to regain a life. One of the primary ways we start the road back is exercise - not the type any of us knew prior this autonomic craziness - just do 1 to 2 minutes three times a day and work up and keep working up. I reduced oxycontin from 2 to 3 10 mg daily to maybe 1 a week by building up exercise tolerance as described on this site not as prescribed by the doctors - their way kept setting me back. Wishing you the best

Yup... and visual snow - if I walk into a dark room it could be a blizzard ya never know. Anyone have visual textural type changes? The world can look like a velour jigsaw puzzle at times what with the wavy lines and textural changes - it goes along with migraine clusters but the dimensional aspect is different and one I apparently cannot translate into MDish,

thanks, Summer.

It ***** to be blunt. I'm on plaquenil which the doc would give me if I had the firm SLe dx but I don't know if they even know what I have. I think the specialists are playing hot potato and trying to make the other see me - basically no one has a clue and there might not be a firm answer but after a decade we get a might impatient. I was able to work up until two years ago but then fell apart prior to my spinal fusion and haven't recovered yet - naturally the MDs think I should but can't explain the dystonia and lots of other things. You know how it goes - you just don't want to go to the doctors and feel dissed. Then you get too sick to leave your bed never mind the house so going to the doc is out of the question - there are sick people there, after all and what have they done for you lately anyway. I really hope you find something that works and gets rid of the pain. If I had a magic wand I'd wave it for you right now.

Cardios aren't so hot either. I'm with you on all of this and Sorry you are going through this Poppet. How long have you been at the elusive autoimmune dx? this is what I have been going through of late but the SLE dx has been elusive and frustrating. I am so sorry for all you are going through. {{{hugs}}} noreen

{{Issie}} You have certainly been through the wringer and back again. Thank God everything worked out eventually although not how may have wanted it to and you are here to share your hard won strength. noreen

Thanks for bringing these concrete examples up, Summer. I have such difficulties and have for a while and had no idea what my issues were with it. I just tend to be hard on myself and they seem so little yet are so frustrating (things like not being able to sort silverware or set the table) that they bring me to tears and I end up embarrassed to tell docs. Did you get a referral from your primary for OT?

Becoming a pavement inspector sort of counts as a faint. It seems that you had plenty of warning. It sounded scary as all get out, though. Next time, god forbid there is a next time, you would not even push it that far. Since this is new for you, you should give your doc a call - as I remember you actually have a good one.

[sending prayers to your whole family for patience and strength during this period.

I Have the same thing except the bowel movements usually turn very watery. It's improved since I've been on Midodrine but no one can tell me why.

I always have Clif mini snack bars with me - the 100 calorie version. I buy the assorted clif pak and have one when it has been too long since I last ate or if I can't stand up to eat.

What a bummer! So sorry it turned out this way for you.

I am on 50 mg 2 x daily as a migraine preventative. The dose has been reduced to a tolerable level for side effects and it does decrease migraine frequency. A lot of the side effects will depend on dosing and whether you have good results will also depend on what dose works. good luck

That looks great, Simmy! I think people would understand that it is a heart issue were you to wear it and hunker down/squat in line. Good going!

{{Nina}}} I am so sorry for all of your pain. It is so hard to separate out the complexity and layers and how it all interrelates. You are so wonderful - I send love and healing vibes in hopes the healing vibes can be your bungee back. Be good to yourself when and where you can and know we are here for you - ((((hugs)))) noreen

I'd go with the recumbent bike. There are recumbents which offer arm exercise at the same time. I've tried describing mine before but I googled images instead - http://www99.epinions.com/reviews/Stamina_...th_Tension_Band This is very similar to mine. The thing with the bike is you can do 3 minutes and get off without feeling intimadated. I started 2 x day for 2 minutes and gradually built up. For me I think having strong legs muscles is important to be able to do squatting when necessary to avoid faints. I haven't put any tension on the arm poles when I use them but just getting your arms moving helps. I am not necessarily recommending this particular one but am merely pointing out you could do both if you research a bit. I think you would feel more secure on a recumbent - at least that was true for me

Did your sleep doctor spell out a schedule of change? For my son, the schedule was a 15 minute change per week. After the 8 or 9 weeks that took, the schedule was then set. The really hard part is that it is not to be deviated from. It can be just as hard to get other docs to understand sleep issue disorders when they play with meds.

Logic would be on your side. However, I always have the C-reactive protein done as part of my rheumy panel and it isn't elevated. That would be a good thing if the drugs were working and no rheumatological disease activity was occurring. However, there is still something affecting the autonomic system that doesn't show up in the usual 2 dozen vials drawn 2 to 3 times a year for testing. Anyone else have different reports with CRP testing ongoing over the course of their disease(s)?

Are your docs at Strong Memorial/Univeristy of Rochester?

Rach- Don't ignore a key point - your urgent need to have a bowel movement. Report it to the docs when you relate the story. I didn't mention it for years out of misplaced embarrassment and ignorance. Also, another post led me to find this - http://www.mda.org/publications/mitochondr...myopathies.html With your ptosis, it might be advisable to look into mito

You were already on the BB when dx'd with the circadian rhythm disorder? My son's sleep doctor put him on a strict sleep schedule and melatonin between 7 and 8. He generally takes 2 mgs. -1 mg maybe once a week. Do you cut the 3 mgs for 1.5 mg dosing? Because it is so crucial, I am concerned about misdosing by a brand not splitting well or splitting and crumbling.

She tried Ritalin and that didn't help. She wanted to try Adderal and see if that may be better, but her doctor said no. She is really struggling right now with all the papers that are due. I know I should be greatful that she is able to still go to school, but I am so frustrated with doctors that won't prescribe medications that have shown to help POTS patients. It is so hard to sit back and do nothing when she is suffering and there may be help available. Today was a rough day for her. You might try going back again. Sometimes the docs take repeated visits for the same complaint more seriously. Keep a journal showing how she doesn't go out (or rarely) and just wants to do her schoolworkl Squeaky wheel and all that

Thanks. It's rough to fight on all fronts - my primary says the muscle enzymes looked good so that is not a problem at this dosage. And so we research... Did you end up with an endo?

For those of you on CoQ10, what dosage do you take? My cardio has me on a statin because he wants my cholesterol ultra-low due to my high stroke risks. However, he never mentioned CoQ10. I have to stick with this doc for a while longer and must educate him. What dose has your docs recommended? Coenzyme Q10 deficiency in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is related to fatigue, autonomic and neurocognitive symptoms and is another risk factor explaining the early mortality in ME/CFS due to cardiovascular disorder. Maes M, Mihaylova I, Kubera M, Uytterhoeven M, Vrydags N, Bosmans E. Maes Clinics, Antwerp, Belgium. crc.mh@telenet.be Abstract INTRODUCTION: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a medical illness characterized by disorders in inflammatory and oxidative and nitrosative (IO&NS) pathways. METHODS: This paper examines the role of Coenzyme Q10 (CoQ10), a mitochondrial nutrient which acts as an essential cofactor for the production of ATP in mitochondria and which displays significant antioxidant activities. Plasma CoQ10 has been assayed in 58 patients with ME/CFS and in 22 normal controls; the relationships between CoQ10 and the severity of ME/CFS as measured by means of the FibroFatigue (FF) scale were measured. RESULTS: Plasma CoQ10 was significantly (p=0.00001) lower in ME/CFS patients than in normal controls. Up to 44.8% of patients with ME/CFS had values beneath the lowest plasma CoQ10 value detected in the normal controls, i.e. 490 microg/L. In ME/CFS, there were significant and inverse relationships between CoQ10 and the total score on the FF scale, fatigue and autonomic symptoms. Patients with very low CoQ10 (<390 microg/L) suffered significantly more from concentration and memory disturbances. DISCUSSION: The results show that lowered levels of CoQ10 play a role in the pathophysiology of ME/CFS and that symptoms, such as fatigue, and autonomic and neurocognitive symptoms may be caused by CoQ10 depletion. Our results suggest that patients with ME/CFS would benefit from CoQ10 supplementation in order to normalize the low CoQ10 syndrome and the IO&NS disorders. The findings that lower CoQ10 is an independent predictor of chronic heart failure (CHF) and mortality due to CHF may explain previous reports that the mean age of ME/CFS patients dying from CHF is 25 years younger than the age of those dying from CHF in the general population. Since statins significantly decrease plasma CoQ10, ME/CFS should be regarded as a relative contraindication for treatment with statins without CoQ10 supplementation. PMID: 20010505 [PubMed - indexed for MEDLINE]