Tegretol ... met with Dh's Neuro today ....

[LauraL840]

Has anyone used tegretol (carbamazepine) for csf "neuralgia" pain?

DH's Neurologist wants to treat DH from two very different aspects. I don't disagree with trying, however the evidence-based research I've done doesn't support medication for treatment of leaks.

Her thought is since the most prevalent CSF leak theory is that pain is caused by two separate issues; 1) low volume/hypovolemia or low pressure and 2) neuralgia pain from 'brain sag' or pulling of meninges (there are several terms for this), that we should treat DH for both aspects and hope for relief with either.

When I have time, I will copy (verbatim) her notes to me from today's appointment, but the gist is this ... until we can stop the leak, we should attempt to control the pain through whatever reasonable means we have available to us. So .... we are going to try tegretol at night and oxycodone as needed. I've finally convinced her to RX just the oxycodone without tylenol as the tylenol portion of percoset has pushed him into rebound cycles for months now and is useless.

She's also allowed for a timed-release of Ultram (tramadol) which he can only take 2xs a week (also causes rebound for DH) and topical lidocaine for scalp neuralgia (which he so rarely has that we won't be filling that script).

DH is adamant about NO MORE EBPs. But I think I've convinced him that it's too soon to give up on the best methods for stopping the leak. This latest one sucked (if I may be so blunt) and I'm pretty certain that the anesthesiologist punctured his dura starting a new leak site... :mad: :( :mad:
His symptoms are now back to where they were in the early Fall and it's almost as if the previous EBPs were a huge waste of pain/time/money!

We're both frustrated, maybe I'm more so, he's just worn out, sore, depressed, tired ... done ... you know. We knew that the possibility of hitting the dura was a complication of EBPing, but were ready to put all our money in the 'bank' on this one being the one that sealed the leak! I guess the positive side is that our neuro, despite the anesthesiologists position, is not ready to quit on EBPs, she just thinks he needs more time for blood to dissolve. We think he needs fibrin or other additional clotting fiber.

On that note (how long it takes for blood to dissolve from EBP), I did question this notion that he could still have some clot after 25 days and she gave a very sound answer that made sense. Most places where someone might have blood clot (ie bruise, etc) are in highly vascular areas (muscle tissue, bone, etc) and the blood disolves more readily. The EBP is placed in the subdural space which is NOT vascular in nature so the blood has no 'quick' way to evacuate and has a tendency to congeal and hang around for a while... makes perfect sense to me now.

I'm at constant odds with myself. Some days very hopeful, positive and certain that the end is coming soon, but these past few days have been 'oh so dark' as I've watched him suffer from both the pain of this leak and the pain from the patch. I was so clearly able to make the point to the neuro today that, while this is a medical issue for my husband, she is treating 5 patients, 4 of which are depending on her to help him get to a place of pain-free living! While I am normally a very strong emotional person around strangers, we had all three of our children with us today since we had no sitter, and I broke down as I explained to her that the implications of my husbands prolonged illness were devastating to our entire family, most importantly to our three children! I have to say (thanks God), she GETS it! She really gets that this is not some great 'once-in-a-lifetime' case, but a real man with a real wife, real children, a real career, who really needs relief. I do finally feel that we are in a place where my husband won't be swept under a rug or discarded as some anomaly to sit on a shelf.

Sorry for the ramble .... I needed to be able to do this in a place where people understand! Thanks

PS I did put in a big fat plug for her education as I gave her the two latest articles that Mokri and Schievink have published on the topic ... hope she reads them!

[Tamaretta]

Laura, first off, I think you are doing a wonderful job! Juggling three kids, on top of an ill husband, on top of whatever else I don't know about has to be very stressful.I can sympathize with all your frustrations and pain. Watching someone you love suffer and not be able to help in any way is it's own brand of hell...(and they don't prescribed narcotics for broken hearts!) You are definitely ahead of the game just by being informed (and having case study articles never hurts!) Being informed is the next best thing to finding a fix/cure in my opinion. My daughter also suffers terribly from either myelograms and/or EBP - she is very thin (5'7" and about 100 lbs), usually sick for about 2 weeks..her back is so painful, she won't move or eat and she feels like she has the flu all over.....she too has said NO MORE! Having a doctor that listens, believes and wants to help definitely is a huge bonus--and explaining the impact that it has on everyone while in front of her was a great thing in my opinion. Your husband may be patient #3,657 to her, but to you and your family, he is the cornerstone and she needed to understand that! (Good job!)....And you are pefectly within your right to rollercoaster your emotions.... some days are better than others...you hear about a new treatment/drug/device/doctor and you wouldn't be human if you didn't still have hope that maybe THIS is the one.....I wish you lived closer! I wish we all lived in a leaky commune somewhere :) Besides being the full time care giver to my daughter, I also have a 14 yo autistic son so I can relate to being frustated with lack of _______ (funds, fun time, knowledgeable docs, CURES, time for me, regular family life, vacations, whine, whine ooopps I meant etc. etc.) I have lost most of my...pride isn't the right word, maybe inhibitions that when people ask "How can we help or call us if you need something", I tell them things like--"we really need a sitter for my daughter, so I can go to the grocery store and not rush thru the aisles fearing that the house is on fire and she won't be able to get out" and "we're always up for company, a phone call and prayers are always welcome". Just knowing that your family is not forgotten really helps, esp when it feels like everyones else's life goes on and you are stuck on the pause button. Do you have some support system to give you a break? Not that a few hours off will solve any problems at home, but it might give you a desperately needed recharge. Voice of experience--a tired, overwrought, cranky, stressed out, homocidal-tendencies showing caregiver/wife/mom is no good for anyone. Even if I walk to the corner for Starbuck's, I feel better by the time I get back and the house didn't fall down because I was gone for 30 mins..I wish I could do more but please know ranting is always accepted here! Feel free to email me privately anytime. Have a great evening!

[LauraL840]

Thanks so much for the PEP talk! I needed that! I do have a great support system in place through our church. While my family is far away, my husbands family is in the area and sometimes helpful as well.

I probably don't get nearly the time away from __________ {kids, house, work (which for me is the kids, their education, the house, etc), leaky man, whine, whine, OOOPS! LOL I too meant etc, etc}. It's funny how this illness has put MANY things into perspective for me. I used to complain about how little time I had for myself and now I have even less! But I don't seem to mind as much and my husband seems to understand much more. However, today I am spending the ENTIRE day, and half the day tomorrow, working on a building project at a local therapy farm that we volunteer at ... and leaving 'it' all behind!

I think about you frequently and how devastating this must be to watch in your daughter! I know how hard it is on me, but I'm married to 'super-cop'. He's a big, ole tough guy and very much the protector of our family and while this has definitely taken him down and out, he's not my child. It's helpless watching a grown man fight this, but it must be so much more so at times to watch the child of your heart fight this and have your hands tied. My heart goes out to you all and I pray this new doctor can bring her some relief!

I think that the G-suit idea is cool! But wondering why they didn't just try a pair of MAST pants (used by EMTs/medics to inflate on lower extremities to force blood/fluids up to heart in mass trauma situations ... 'um I should say RARELY used - I've never used them, not in 15 years of fire/medic work). Seems they'd have been cheaper and run on compressed air, not hydraulics. Try Googling MAST (Military Anti-Shock Trousers) and see what you find, or here's a link to one site: https://lifeassistshop.life-assist.com/CatalogItemDetail.asp?catsection=7&catsubsection=85&ItemGroupRecNo=561
or
http://www.stevensurethane.com/medical/mast.html
At any rate, I really do appreciate 'out of the box' thinking in regards to medical care ... even MORE so now as we too are pursuing this with a vengeance and want to discover, for all of us, a NEW NORMAL!

Thanks again, so much, for your kind words! It really helps to have found this forum and realize, while this is rare and unfortunate, we don't have to go it alone!

[guineapig]

Laura,

haven’t been rx’d tegretol. been on low doses of lyrica, 75mg 2x day, which works for radiculopathies and neuropathies. been on higher doses for the ich pain, which works at a diminishing capacity but the side effects at the required high dose 450mg a day, are too much –zombizim. neurontin (generic gabapentin) works well, even for the ear and face pain caused by ich; others i’ve talked to, report success with it as well at varying levels.

rx for ich symptoms works. but it is based upon traditional medication for usual symptoms. in short, the physician, or even the patient for that matter, need not even know the patient even has ich or a leak. patient reports symptoms, dr does half-asss clinical work up, patient wastes money and more importantly life (what little there is), patient repeats process with X more drs, patient finally finds human md, md rx’s meds for particular symptoms, somewhere down the red brick road patient is hopefully diagnosed, patient is treated for leak, patient is still rx’d meds for ich symptoms.

i have found that oxycodone, which has 325mg ace…, err tylenol, is more effective than that w/out the tylenol. this drug for me had nothing to do with rebounds except once, which i only suffered when 1 time of 6 was confined to bed rest for extended period after ebp.

i would guess that the blood gets absorbed more readily than what has been suggested to you. i say so from my own experience, which is to say, it is, my experience. my first ebp, 20 odd ccs lumbar, which is close to maximum capacity, was followed by 30 odd ccs lumbar and another 30 ccs thoracic about 10 days later. must’ve been enough room in there to pump more blood in that duration of time. i have found that laying down for 2 days post ebp readily helps w/ the back pain after ebp. curious to know if this indicates it absorbs/dissolves faster this way.
all i know is the reduction in pain, from about 12 days to minimal, makes lying down for that long worth it.

of note, the spinal surgeon of decades experience, worried about fibrosis from the ebps. the neurosurgeon who prescribed, said “naaaahhhhhh”. maybe he said “baaaahhhhhh” instead. i must not have been listening that close; perhaps i was paying too close attention to his (curly, white) clothing.

living in your particular situation. hmmmm, what works for one person doesn’t necessarily mean it will for another. each must find the best way to ummm, oh i do dislike the word, cope. so i can say what worked for me, sort of. have had this invasion of pain for more than 2 years now. had the wife for over 7. this thing became all we were minute after minute, etc, month after month. one thing we did, sometimes we forced a topic of conversation, about whatever, even if it is strained, to live in something else besides the obvious. it (is) was difficult and almost always we came back to the same thing within a short amount of time. but it grew. he won’t feel like making decisions. my own personal favorite: “do you want some popcorn?” my response: “i don’t know.” won’t feel like talking, nor participating, living for that matter. (hmmm, perhaps these should be clinical criteria for ich diagnosis.) think it out. make a stupid list. cross it out. do something else. then go somewhere private, yell. and try it, something else, again.
guineapig

hmm, don't forget to scream (to the air). i would myself, but it would probably exacerbate the ich.