Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 I don't belong to a PTC support group, but since I got Internet in 98 I've looked it up every so often (actually searching for links to PTC and implants) and have came across the stories of various people. They are usually found on neurology websites. This board is a breakthrough for me in having found women with implants who have it. If out of this one board someone replies within the first few hours who has it (), then I think that's a sign there are probably quite a few others out there with it some where and it just reassures me even more that it's no coincidence and probably wasn't pure weight gain like doctors would like to make you think. There was a site I found about a doctor doing a study to see if PTC is related to blood clotting conditions -such as Polycystic Ovarian Syndrome, but such diseases are also common among over weight women. So, it's like trying to find out which came first -the chicken or the egg. As for flare ups, speaking for myself -the less active I am and the more I sit around, the worse it is. (Other than onset, weight hasn't affected mine either way.) There are times of the year I can't move (from the body pain/joint pain) and it seems those times are when the head pressure gets the worst and if I'm not already taking Diamox (for maintenance) I start and/or bump up my dose. Then I take it a few months. There's not a moment of the day my head doesn't hurt, and I usually have a couple migraines per day --but if I notice less head "pressure" I go off the Diamox every chance I get. It's hard to take. As far as the seizure sequence, I've never once had a seizure with this, but I have fainted. (Especially after a sudden rise in blood pressure or activity.) I know fainting is no where near the misery of seizures. I've done the spinal tap route, and it's just so painful, plus the following day the migraine is as bad as a migraine is at onset (where they drained off so much fluid)---I hope to never do that again, although the relief lasted about 3 or 4 months. I was nearly headache/migraine free the entire period. The downfall of going off is that I can't resist drinking Pepsi! I know some of you are cringing, but since you can't drink anything carbonated while on Diamox, it's such a huge treat. I went 3 years drinking nothing but water and my skin and hair looked better than ever, by the way, so I know soda affects your body and how bad it is. I know we shouldn't have sugar... but it's my 1 thing I actually get bad cravings for during stress. I do drink it in moderation when I can have it. I limit to 1 or 2 servings per day at those times. I'm working on it!!!!!!!! Rogene, do you think silicone would show up on an MRI if contrast/dye wasn't done? I have bad reactions to shellfish, so I can't do the dye. I haven't had an MRI since 98 -and I know the machine was old even then. (It was brought in on a rig.) Even though I have saline implants, could enough silicone migrate to do that? Should I request another MRI to check? (Thanks for all your knowledge.) Brigite In a message dated 7/9/2006 1:17:16 PM Eastern Standard Time, saxony01@... writes: Brigite, Please tell us more about the PTC support group . . . How did it come to be formed and how did they find they had tubes in common? . . . Or are did the tubes come after the diagnosis? PTC sounds truely awful! . . . I take it that you have flares where it gets really bad, then subsides with a spinal tap or the medication. . . How frequent are the flares? I'm wondering if Shari's first seizure was the legitimate one. Then, after bumping her head that the swelling precipated the rest? If there could be loose silicone in her brain that her body is reacting to. One thing . . . regular MRI's don't necessarily show migrated silicone . . . One silicone sister had silicone granulomas that could be seen as well as felt. . Yet the MRI didn't detect them. . . An old test, xerography, could see migrated silicone, but those machines were pulled about the time the implant problems became public. COIL MRI machines are better than the regular machines, but not perfect. Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 Diamox is actually a very strong diuretic -another reason it's so miserable to take. (Especially on top of hypothyroidism and possibly having Sjogren's Syndrome which attacks moisture.) So I stay very dried out, and it's really hard to notice a difference in hydration -because I never truly feel hydrated. The sugar thing makes so much sense... I was on antibiotics twice for 10 days at a time during May AND June waiting on oral surgery --then it STILL got infected afterwards, and I had to take ANOTHER antibiotic. So that was 3 rounds of antibiotic. I'm having the worst sugar cravings ever -and have for about 2-3 weeks now. I've never been a person to just sit and snack on sweets unless I crave something sweet ---because I know the weight issues with it. So what you're saying makes so much sense because it never fails ---the times I have sweet cravings are the times my body feels the worst and I'm too weak to be out of bed long. (Going through that now.) It sounds like that could be because I've allowed myself to eat sweets and fed the organisms and they're working harder against me. Wow... this is such a complex attack on the body. Thanks for helping women figure this out. Seriously, I can't thank you enough, Rogene, (and the others) who have shared so much helpful information. I have actually already made a note to find that book when I saw it mentioned on other posts. Brigite In a message dated 7/9/2006 4:02:58 PM Eastern Standard Time, saxony01@... writes: I'm wondering if diuretics might help keep your fluid levels down. . . Are you restricted from eating salt? . . . Also, the body tends to retain more water when it's not getting enough water. . . Have you noticed any ebb and flow to your symptoms with how hydrated you are? I've noticed that I tend to retain water when I'm not physically active. The muscles work to move fluids through and out of the body. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 Brigite, Something that is likely at work is a systemic yeast/fungal/Candida problem . . . If you don't have one, you'd be highly unusual among implanted women . . . This is the primary focus of Dr. Kolb's protocol. I'd recommend reading "The Yeast Connection" . . . The problems that come with yeast vary almost as much as those that come with breast implants. There are other good books out there, this was the first to gain attention, and is still important. When one has a yeast problem, they will crave sweets because sweets feed the fungal organisms . . . If one can reduce the fungal problems, and rebuild a healthy flora in the body, the healthy flora will take over to control the fungal issues . . . Right now, I'm dealing with my own issues. I had to take some antibiotics in conjunction with having a polyp removed during a colon exam. . . I don't regret taking the antibiotic, but it's a huge reminder of how delicate the balance is between the good and bad organisms. Steroids, stress, and illness also suppress the immune system, allowing these organisms to grow. Whether or not this has a role in PTC, I don't know . . . But, if I were you, I would want to know. There is a simple self-test you can do to see if you have a fungal problem. It's not scientific, but it's free, and for me, it tracks very well with how closely I manage my own fungal issues and diet. The test: The first thing in the morning, before putting anything in your mouth, spit in a glass of water. Let it sit for 15 minutes. If the water is clear - or very slightly cloudy, you pass. . However, if there's a milky blob with tendrils hanging down, chunks floating, or a milky blob sunken to the bottom of the glass, you likely have a fungal issue. Diet is the major treatment . . . If you don't feed the organisms, they will die off. You can help it along with anti-fungal medications . . Nystatin and Diflucan come to mind. There are others . . . The problem with prescription anti-fungals is that they cause a sudden die-off of organisms that create toxins that the liver must flush. . . Using "natural" products like Garden of Life's Fungal Defense (one bottle) followed by Primal Defense (indefinitely), in my opinion is preferable. Primal Defense will repopulate the digestive system with organisms that should eventually keep the negative ones in check. Acidophiles (refrigerated brand) is good too. . . . Here again, there are other brands. . . Dr. Rubin's "The Maker's Diet" relies heavily on these products. As to an MRI . . . I don't think it would be useful for detecting small amounts of silicone . . . Should you need one for another reason, you might ask them if their machine has the capability of detecting the tiny particles that may be there. A coil MRI may, or may not be able to detect migrated gel. . . You'd likely have to travel to one of these machines - which doesn't sound like a good option for you. I'm wondering if diuretics might help keep your fluid levels down. . . Are you restricted from eating salt? . . . Also, the body tends to retain more water when it's not getting enough water. . . Have you noticed any ebb and flow to your symptoms with how hydrated you are? I've noticed that I tend to retain water when I'm not physically active. The muscles work to move fluids through and out of the body. I recently noticed that my blood pressure varies considerably based on how active I am. . . When I was doing radiation therapy, if they took my blood pressure as soon as I got arrived, it was at least twenty points higher. . . I started telling them to give me a few minutes to settle down - and my blood pressure was always on the low side then. I can't imagine having a constant headache! . . . Can you relieve the pain with meditation? I don't know your husband, but he has to be a good man! . . . It's really hard for a man to see his wife suffer on an ongoing basis and not be able to "fix" things, yet stay on an even keel! . .. Please give him a hug from all of us . . . he's a man to appreciate! Hugs and prayers, Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 Rogene -I forgot to address 1 thing you asked about -meds for headache/migraine. I am *SO* drug sensitive, that I prefer taking only the bare minimum of medications. I've tried preventative meds like Calcium Channel Blockers (heart medication, actually, which works to prevent migraines), as well as medications like Inderal LA which work to keep your blood pressure low and prevent migraines. With any I've tried over the years, I've had all of the adverse side effects. Inderal LA worked to an extent, but it made my blood pressure so low that all I could do was sleep ---on the lowest dose. I never did get adjusted to it. There are pain meds for the symptoms, but if I lived on them the past 8 years, I'd have surely became dependent. Between docs throwing muscle relaxers at you for the Fibromyalgia, or pain pills for rest... I've always thought "If I'm THIS age and start using this stuff -what happens in ten years? What will work?" So, thankfully I made the decision years ago to meditate pain away. I have built up such a high pain tolerance, that I've learned to tune out migraines and headaches. Although some require that I go into a darked out room and lay down in silence and just see them through ---I almost always just deal with them. I have Fioricet to take if I have to ride in a car, though ---because those are intolerable and dangerous to my pupils. I also take A LOT of Phenergen! For Fibromyalgia pain, I do take Durabac sometimes when it gets too bad to take, or if I have someplace I have to go. I'm going to make a separate post about Fibro pain to see if it helps anyone out there. Thanks again for your brain smarts!!! LOL Brigite Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Brigite,The drying out part brings us back around to silicone dioxide . . . guess what's in those little packets they put in pills to keep them dry? Silicone Dioxide! . . . Many vitamins, including Garden of Life, have silicone dioxide in them . . . Some women (and the children born to them are hypersensitive to silicone . . .silicone dioxide brings on their worst symptoms . . . When supplements come in powder form, they usually don't have silicone dioxide, With prescription meds, you have to ask the pharmacist . . . One lady found that the pharmacist could actually make her medications for her cheaper than the manufactured form.I don't know where that would fit with you Brigite . . . but, when things start changing, it's something to consider. I'd suggest getting checked for silicone hypersensitivity . . . Right now, I don't remember who does the testing, but I can get the information! . . . Of course, with your implants still in you, you'd be fighting an uphill battle - but knowledge is power. It takes at least three weeks to lose the sugar cravings . . . by the time you lose them completely, sweets will taste disgustingly sweet. It really is a bear! . . . When Candida is at it's worst, you even need to avoid foods with natural sugars - like fruit and carrots. This group is great, isn't it? . . . I've learned so much for myself . . . and just keep on learning. The women here really want to see each other get well. We understand how bad it can be when we feel so bad and nobody understands! Hugs,Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 sheeeshhh.. you guys know what else..... the seizure med they have out me on? #1 issues w/ it is that it decreases sweating therefore increasing body temp drying you out.. need to extra hydrate.... I have been on it a week and have already had to switch face lotions as my face has gone from partially oily to dry..... my hands as well.... I am lubing up all the time now.... you know - not to sound like a jerk, but i have always kinda enjoyed the fact that most people upon meeting them think I am much younger than I am.... at least 5 years. I guess that is gonna go away fast w/ this mess.... had a funny situation last year on my "angel" Logan"'s football team..... the coach was a female - asked me who scott (hubby - asst coach) was to me and I told her and she said - oh.... so he is a little older than you, huh... I said " well - a little ".... not thinking anything of it - he is 4 years older.... she then very sarcastically said... "ya think!!!"""" I then asked her how much older she thought he was and she said about 15 years... hehe.... some of you have met me - the non-newbies here.....or possibly seen my few minutes on the MTV famous face thing. I looked a lot better then.... thinner at least.... oh well.... talk to you later shari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 I'm here to tell everyone that Shari looked beautiful when I met her in D.C. last year! . . . She was having a difficult time even then though. Shari . . . Didn't you say that Dr. Blais found 22 organisms in your implants and capsules?Hopefully they can find another medication that doesn't make you tired and dried out! . . . It sounds awful! . . . The post-cancer medication they wanted me to take was the same . . . It felt like some pushed my fast-forward button for aging! . . . It may reduce the incidence of cancer, but I can't believe it increases ones life-span.The doctor said we need to consider a 10 year plan for me . . . I told him, "No, my mother's 93 - I plan on being around much longer!" . . . He said we'll make it a 15 year plan then. Grrrrrr . . . I plan to outlive him!Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Brigite, something that works for some people for migraines, is Feverfew - a herb. Also, for my fibro pain, I have found Coral Calciu, (with 72 minerals in it) decreases my pain considerably. I've been on it for a months straight, and can do alot more physically. Love & Healing, Sunny > > Rogene -I forgot to address 1 thing you asked about -meds for > headache/migraine. > > I am *SO* drug sensitive, that I prefer taking only the bare minimum of > medications. I've tried preventative meds like Calcium Channel Blockers (heart > medication, actually, which works to prevent migraines), as well as medications > like Inderal LA which work to keep your blood pressure low and prevent > migraines. With any I've tried over the years, I've had all of the adverse side > effects. Inderal LA worked to an extent, but it made my blood pressure so low > that all I could do was sleep ---on the lowest dose. I never did get adjusted > to it. > > There are pain meds for the symptoms, but if I lived on them the past 8 > years, I'd have surely became dependent. Between docs throwing muscle relaxers at > you for the Fibromyalgia, or pain pills for rest... I've always thought " If > I'm THIS age and start using this stuff -what happens in ten years? What will > work? " > > So, thankfully I made the decision years ago to meditate pain away. I have > built up such a high pain tolerance, that I've learned to tune out migraines > and headaches. Although some require that I go into a darked out room and lay > down in silence and just see them through ---I almost always just deal with > them. I have Fioricet to take if I have to ride in a car, though -- -because > those are intolerable and dangerous to my pupils. I also take A LOT of > Phenergen! > > For Fibromyalgia pain, I do take Durabac sometimes when it gets too bad to > take, or if I have someplace I have to go. > > I'm going to make a separate post about Fibro pain to see if it helps anyone > out there. > > Thanks again for your brain smarts!!! LOL > Brigite > Quote Link to comment Share on other sites More sharing options...
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