art3

We flooded in Harvey. For 20 years we had carpet in the family room and hall-then Harvey came. 10 months later-last week (June 9)- we decided to put in carpet again in those 2 area. In fact the type is very similar. I do have mild nephropathy in my feet-but it usually doesnt bother me much. BUT BIG problem- my feet burn like mad whenever I walk on this new carpet--and now it rages even more.  And  Idk what is going on-its a nightmare. My UT neurologist even called me about it-she wonders-doesnt think nephropathy would have blown up so much without a change going on. Im plain despondent! Any idea?

hi

Im in houston tx. sufering from severe lightheadedness, sweating, neuropathy etc.. ive had tilt table showing mild pots-but things are far worse. im sosick of this with no real help-

art3

hi art -

aside from looking at DINET's physician's listing (as angela suggested), if you let us know what part of the country you're in people may be more likely to chime in with some suggestions/ thoughts for you. i know you said you're able/ willing to travel, but it usually still makes sense to pay some attention to where you're coming from.

melissa

hi all

klonopin for the last 2 yrs has been a godsend-it relieved much of my lightheadedness, fatigue and neupathy etc.. in last 5 days its doing something else-im drowsy all the time. feel groggy etc.. what one earth is going on? we tired blood rpessure meds etc with no great help-klonopin did. noone here knows what to do. im in terrible agony. ive got gret insurance and medicare-where can i go to get this finally diagnosed fully etc? ttyl

thanks

art3 intx

hi

i called dr cheney and eamiled dr bell if they know anyone in the houston area that follow their practice of treatingcfs. ive not heard back. how can i find out?

art

hi-

are any of u in houston and see a good pots dr? im still searching and things are getting really bad. surely someone here is in h-town or close to it!

art3

hi-lyrica sounds also good-less adictive. how much does one take? im going to call this dr on klonopin and doxepin combo. ive been on doxepin before and it is great-until u max it out. ttyl-art

A Guide to Klonopin (Clonzepam) For ME/Chronic Fatigue Syndrome Patients by Cort Johnson

http://phoenix-cfs.org/Trt%20Klonopinhtm.htm

"For years I have said that Clonazepam is perhaps the most useful medication in ME/CFS"

Dr. David Bell, August 2007

"Klonopin has been Dr. Cheney?s most effective drug for CFIDS over the years"

Carol Sieverling

Klonopin is a benzodiazepine that calms down the brain by reducing the ?set point? at which it?s neurons are activated. It does this by increasing the production of GABA, an inhibitory chemical in the brain. Klonopin has primarily been used to treat panic and seizure disorders.

Klonopin May Work in ME/CFS Because the overactive neurons in ME/CFS may lead to ?information overload?, oversensitivity to stimuli and exhaustion.

A Computer Analogy. e can visualize the brain as a huge computer with excellent storage capacity and an excellent processor but with somewhat limited RAM. It is able to effortlessly process and store enormous amounts of information from the body but in order to run properly it must filter out substantial amounts of information. If it doesn?t it runs the risk of literally burning its neurons out in its attempt to keep up and crashing (going into a seizure).

Imagine being surrounded by a bank of TV sets and trying to concentrate on all of them ? that?s what may be happening in ME/CFS. Dr. Cheney believes this constant flood of information may cause the state of ?sensory overload? that requires patients to seek a place of quiet to rejuvenate themselves. It may also be responsible for the increased sensitization to all sorts of normal stimuli such as light, noise, motion and pain often found in ME/CFS.

By reducing the ?set point? at which the brain becomes active Klonopin removes most of those TV sets; in effect it gives the brain the chance to rest and rejuvenate itself. Dr. Bell states Klonopin is most effective in those patients who feel ?wired but tired?.

Healing A Damaged Brain?Dr. Cheney puts Klonopin in the ?neuroprotector? category. In 2000 he stated that since overactive neurons eventually burn themselves out and die that ME/CFS patients will suffer neuron loss unless this problem is brought under control. Since he made this predication several studies have shown some brain volume (grey matter) loss does occur in both ME/CFS and fibromyalgia.

Dose - lonopin?s effectiveness in ME/CFS is intriguing given that one of its side effects is fatigue. Too much Klonopin can, in fact, cause fatigue in ME/CFS but just the right amount will increase energy levels and calmness. Physicians seek to find the ?sweet spot? between over and over activation of the brain by varying the dose.

Dr. Cheney most frequently prescribes a combination of Klonopin, Doxepin elixir and a magnesium supplement (Magnesium Glycinate Forte/with taurine or a magnesium (glycinate) complex.

Klonopin ? two or more 0.5 mg. tablets at night for sleep. One quarter to half a tablet in the morning and mid afternoon to improve energy and cognition. Increase the dose until you become drowsy and then cut back. Double the dose during severe relapses.

Doxepin elixir (10 mg/ml.). Acts synergistically with Klonpin to assist sleep. Start with two drops at night and gradually increasing until you experience grogginess (?morning fog?) in the morning.

Magnesium glycinate (200 mgs.) at bedtime.

Side Effects

Addiction: Because Klonopin is a benzodiazepine it has the potential to be addictive. Dr. Cheney reports, however, that he has never seen a case of addiction in the many patients he?s treated.

Withdrawl: Klonopin must be withdrawn slowly. Interestingly Dr. Cheney reports that patients who are recovered suffer no withdrawl symptoms ? only the still ill patients who must withdraw from the drug gradually.

Klonopin vs. Clonzepam

Clonzepam is the generic form of Klonopin. In Dr. Cheney?s experience Clonzepam is not quite as effective as Klonopin. Dr. Bell, however, reports good success with Clonzepam.

i too find klonopin helps lightheadedness,brain fog etc.. but here is my prob-i take 1-2mg but overtime it loses its effectiveness somewhat. some dr told me u can combine it with some antihistamine or anti-depressant to increase its effect again. can any of u help on this?-art3

hi-A NEW UPDATE...

i wonder about this-is it the chicken before the egg? for some months

i thought i had POTS. my chest is tight, Im lightheaded to the point

where it is hard to think straight. these symptoms really flared up

back in sept 06. at this time i also developed neuropathy in my

legs, muscle weakness etc.. im so tired half the time it is hard to

breath. i sweat heavily. this is a terrible situation that gets so

bad i have 0 quality of life.

i had gastroparesis from food posioning yrs before these

symptoms began. i also apparently have crohns,testing positive this summer for 2 key markers of the disease and yrs of colon tests, ulcers etc..

a few weeks agoi had skin punch biopsies done on my leg by a great beuro here in town. he is checking the nerve cells for causes of neuropathy etc.. makingmatter worse Ie had chronic sinus issues as well. I upped my allergy shots to every week and my ent says that the meds Im on dry up things and could be causing fungal infections in the sinuses-and this has dragged on since amrch with no relief-just more symptoms!

the neuro who did

my tilt table and stuff here says either these symoptoms are from

the gp, the chronic gerd affecting my lungs and thus causing chest

tightness etc, and crohns causing weakness-or it is pots or

something. his test show some mild abnomralities on the tilt table,

but he didnt think it was enough to be doing all this. this dr is

the only pots dr in town. the situation for the first time seems to

me somehwat hopeless. i do have low blood pressures-however the dr

checked back 10yrs in my record and we saw my blood pressure has

always been at around 105/60. i have always been thin and tall-he

says my pressure is normal for being this small. certainly crohns,

gp and gerd could cause all of these symptoms,right? how does one

figure this out? i get my best hope and ideas here! regards to all

art in tx

hi

I have not posted in months, but new developments warrant...

i wonder about this-is it the chickenbefore the egg? for some months i thought i had POTS. my chest is tight, Im lightheaded to the point where it is hard to think straight. these symptoms really flared up back in sept 06. at this time i also developed neuropathy in my legs, muscle weakness etc.. im so tired half the time it is hard to breath. i sweat heavily. this is a terrible situation that gets so bad i have 0 quality of life. i had the gp yrs before these symptomns began. i also apparently have crohns. after yrs of studies showing ulcerations etc in the bowel, but no certainty of what it was i had a blood test positve for the asca igg marker-unique tomost crohns patients. i just got this result last week. the neuro who did my tilt table and stuff here says either these symoptoms are from the gp, the chronic gerd affecting my lungs and thus causing chest tightness etc, and crohns causing weakness-or it is pots or something. his test show some mild abnomralities on the tilt table, but he didnt think it was enough to be doing all this. this dr si the only pots dr in town. the situation for the first time seems to me somehwat hopeless. i do have low blood pressures-however the dr checked back 10yrs in my record and we saw my blood pressure has always been at around 105/60. i have always been thin and tall-he says my pressure is normal for being this small. certainly crohns, gp andgerd could cause all of these symptoms,right? how does one figure this out? i getmy best

thanks for the help-but yes Ive checked. a few docs in dallas. that s a big trip for me. although I wonder how much can be done? art3

hi

havent checked in a while, but things are going horribly wrong. drs are clashing on what is going on. Istill have the sweating issues, fatigue and terrible muscle weakness and neuropathy. I have a topical cream made of neurontin, lidocaine and ketonen. it helps somewhat. some drs think imay after IBD as some colonc checks over the yrs showed ulcers-and the ibd has spread into the nerves. had another tilt table with dr harati here and the tests showed neuropathy, irrgular sweat glands, and minimal changes in the tilt table. they did a msucle biopsy which was normal. im very alarmed by all this going on. also have developed jaw joint problems in the last six months.nothing has yet turned up in blood work. I need better manegment of the neuropathy-but its hard to treat if we dont know the cause right? my drs are alarmed , my family as well. what else can I do/ is htere a pots neuro to see here in houston? I need help more than ever. back in sept while visiting my sister in va a dr put me on all sorts of blood pressure drugs and it was scary. i live here in hosuton so there has got to be help around here. dr h at baylor is great, but baffled like everyone else. I value your input-------

thanks

art in hou

well this is confusing bc i thought i read it can be caused by surgery. but i dont get how

art3

One POTS site years ago HYPOTHESIZED that some surgerys can put the neck in a position to change pressure on the spinal fluid thus ALLEGEDLY triggering POTS symptoms. But that was usually for folks predisposed to Chiair issues or other neck stuff I don't want to get into here.

No, implants do not cause POTS imo.

hey

can POTs be instigated by a surgical implant procdure. because that is when my started. if so-can any of you guys cite articles etc on this? thanks so very much

art3

hi

Im searching for a new POTs Dr here in texas. Im in houston but willing to drive a bit out etc.. this is insane having so much trouble finding such a dr here!

thanks

art3

hi

is there any drs in houston tx that take pots patients? im back home and the nuero seeing me says neuropathy cannot be from pots. my legs are tingling and weak and some atrophy in one, but the bloodwork and mri are fine. help..

art3

hi

my internist prescirbed my cerefolin for fatigue and memory, but caremark wont cover it, so we need a letter of medical necessity pointing out specifics on why I need this medication. have any of u had to do a letter for this drug to get it approved? if so email me what u wrote! i mean what studies are there showing this helps us etc.. please let me know asap as it takes 30 days for them to even authorize it..

thanks

art3

Im having new problems, very odd. about two weeks ago,during my visit here to va, my feet became very sore. i have had a history of feet probs with my arches so i though that was it. but in the past week i have developed tingling in my feet running up to my knee. it is turning into ****. i have a cold feeling off and on in my feet as well. a heating pad helps a bit, so does klonopin. im overhwelmed here. my sister's friend is a podatrist-she told me it could be a foot injury, circulatory probem or neurologic. could it be nmh? she sent me to a neuro. this dr said it liekly is neuropathy, but wasnt sure if it could be other things, ike ciruclation or injury. it is hard to sleep at all now. i also wondered if taking the klonopin more regularly up here has made me addicited and my body is requiring more. i read that klonopin withdraw can cause muscle pain etc.. im going home this thurs for rosh hashanah and not sure about returning here at this point. i will see my houston(my home) internist thurs-but what on earth do w do? Im geussing neuro tests and a test for circulation ? sorry for the long post-but im freaked out about this and worry it is part of nmh or my nerves not getting enough nutrient seven though i have tested ok on nutrition and absorbtion despite my gastroparesis and possible ibd. hope to hear back. thanks for the help

My mom lives in Arlington and has an internist she likes. I will ask her the name and send it to you in case it is helpful.

Katherine

please ask for me

art3

hi

do any of u know of a good internist in the arlington/dc area? dr rowe wants me to try some different meds as Im desperate for relief of any kind. I need a good internist to help quarterback this stuff asap.

thanks

art

hi Im new here and very frustrated with my recent diagnosis. yal are pros. help me if u can

Im 26 yrs old and have some gi motility issues.Ive been having some fatigue etc but then after my plicator implant and removal my issues got worse. Im more faitgued, lightheaded, chest tight, harder time sleeping etc.. a dr diagnosed me with a slight case of POTs. he did a tilt table which showed some bood pooing. he gave me flornef-which was a nightmare. never have I been so ill on medicine. I felt worse-fatigued, terrible leg and arm weakness etc.. with other things to be done I had to go off it. Im so sick of this. what else can on e do. I mean my pots dr is a cardio, so wont he just give me more cardio drugs? the only thing that helps a bit is klonopin in the morning. I dont know why. Im not familiar with all the treaments. is physical therapy good? what kind? antidepressants? the dr says if my gerd wasnt so terrible, the gastroparesis wasnt so bad and the bowels not so raw things would improve some. Imseeing a surgeon on alleviating something here. any advice on all this? I have very poor sleep-10pct REM. and the motility stuff-came after food posioning in '01. I need major help here...

thanks

art3