Seraphim Posted September 27, 2015 Share Posted September 27, 2015 Oh my goodness! You poor thing! I am definitely keeping you in my thoughts. Hugs. Link to comment
faraday Posted September 27, 2015 Share Posted September 27, 2015 I'm sorry you're going through this. I wish I had something comforting to say. I hope it goes well in January. Link to comment
sara-pezzini Posted September 27, 2015 Author Share Posted September 27, 2015 Thank you both! Yes it's very scary, but it has to be done, with these pains getting worse and worse, action needs to be taken Link to comment
tiredofvampires Posted September 27, 2015 Share Posted September 27, 2015 I'm sorry you're going through this, sara, and hope that after your procedure, you'll be able to look forward to relief. I live with a lot of pain, myself, so I know how debilitating it can be and how it affects your whole outlook. Remember you are brave and strong, and you WILL get through this! Also, there are ways to treat pain besides oral medication. Have you tried physical therapy? Microcurrent is something that can help TN. Also, pharmacies that compound prescriptions (mix their formulas of medications from scratch) can make gels and creams that you apply to the skin, and they use a medium that gets the medication in through the skin. So you are treating it more locally rather than systemically, so less side effects. You can have a formula mixed with several drugs used for neuropathic pain, which is another advantage. You and your doctor need to find a compounding pharmacy that does this. Link to comment
sara-pezzini Posted September 27, 2015 Author Share Posted September 27, 2015 Thank you! This was extremely helpful! I had a blood test done to see is the liver is still able to process the meds and the neurologist will call me tomorrow with the results. I have now read up on the cremes and will ask him for it tomorrow! It seems great results have been made with ketamin 10%cream so i will ask him! In the gamma knife hospital i will also ask for the possibility to do radiation on tumor and facial nerve at the same time and how that will go. Read good results about that as well. But the cream has me hopeful for the first time! If he prescribes it and it works i will be eternally greatful! Because at the moment i have many thoughts of not caring if i never wake up again. I know that is the depression but the pain is a great cause of that! So this gave me some needed hope! Link to comment
tiredofvampires Posted September 27, 2015 Share Posted September 27, 2015 I'm glad you have some more hope! Don't ever give up, don't ever give in! New and better understanding of pain is occurring all the time, however slow each day feels when you have it. Pain that doesn't go away can definitely make the happiest person suicidal. I know because I've been there, and I love life. It depletes your endorphins and balance of neurotransmitters. Yes, ketamine is one -- others common ones that can be mixed in are gabapentin, pregabalin (not one I've used, but can be), amitriptyline, clonidine. Compounding pharmacies that do a lot of formulas for neuropathic pain have all kinds of mixtures with different percentages as standard, but your doctor can always increase the strength and you can experiment with which ones seem to help most. Sometimes it's good to have an anti-inflammatory drug in there too, a popular one is ketoprofen. I think it's good to start with one or two and then add, but you might have a pharmacist that can tell you what works well for TN patients, and you can start with that formula. There are also anesthetic drugs that can be mixed in -- lidocaine, for instance or the other "-caines". Normally they will make your skin numb and don't go in very deep, but with the transdermal creams that are used, they can go in deeper. Also if they are a higher percentage in the cream. The other meds quiet the nerve impulses, the anesthetics actually numb the area so you just don't feel it (well, ketamine is an anesthetic, but it doesn't numb you.). Some pharmacists will have a standard formula with lidocaine in there. You'll apply it several times a day, and the effect is cumulative -- as you apply more, more absorbs into the tissue. I strongly recommend you find a pharmacist who you can talk to as a consultant you trust - they have been immensely helpful to me in the past, and can even suggest things your doctor hasn't thought of (many doctors are absolutely ignorant about compounding pharmaceuticals and methods, it's a shame). Since you live in Europe, your pharmacist might also be more familiar with the oral use of Lose Dose Naltrexone (LDN -- this is a prescription drug, but it's used for the purpose of chronic pain in very small doses, even milli-doses) and a substance called palmitoylethanolamide (this is actually a dietary supplement, a fatty acid -- the only company that I trust with this product is PeaPure, which is shipped out of England, but I believe manufactured either in Italy or the Netherlands. It's properties for pain are similar to the cannabinoids in marijuana, but you don't get a buzz.) You can google these, but they (especially the LDN) have been researched widely -- mostly by European doctors -- for the treatment of chronic neuropathic pain (there's layperson as well as expert online information, and videos on youtube). They are used together well. A pharmacist who knows about these substances, who has a large patient clientele, will likely be able to suggest protocols for you. And you won't have as much trouble getting PeaPure as I do, in the States! Compared to the oral meds you are using now, the sides effects profiles of both of these is little to none. But start with the topical creams, in a transdermal base. That's good you're checking around for different pharmacies that have pain cream expertise! I'm also researching that therapy device I linked you to (the paper), the Frequency Specific Microcurrent, and it's truly amazing how it can help nerves heal. In your case though, pressure on the nerve is causing the pain -- so until you get that pressure off, you're kind of just treating symptoms of pain. It's a good idea you're going for the procedure -- but I'm concerned that you say you might use radiation on the facial nerve. The nerve might be injured permanently by that and cause you more pain -- when the problem is not the nerve itself. So what is the rationale of doing radiation on the nerve? The peripheral nerves can heal when the irritant is removed, so I would be VERY skeptical and concerned about a procedure that is treating the nerve invasively. Link to comment
tiredofvampires Posted September 27, 2015 Share Posted September 27, 2015 Oh yeah, I should add one other alternative -- there is also a nasal delivery (spray) of ketamine you could try. I believe there might be a few mild side effects with this, but not like the oral stuff you're getting. You'd have to ask about that. You can research nasal ketamine spray, or better yet, ask a knowledgeable pharmacist who makes nasal pain sprays, but here is an excerpt and article about how it was used for shingles pain (but derived from a TN treatment protocol): The decision to add intranasal ketamine was made based on two studies: one study reporting a metered-dose intranasal spray with lidocaine used for trigeminal neuralgia and the other reporting safety and efficacy of intranasal ketamine for the treatment of breakthrough pain [18, 37]. Based on this literature, it was theorized that intranasal delivery of antineuropathic therapy could be successfully delivered to the trigeminal nerve and that ketamine could be used safely and effectively for breakthrough pain; both criteria are necessary for treating our patient effectively. As the patient’s symptoms were similar to those seen in patients with trigeminal neuralgia, it seemed a logical target for this patient’s refractory breakthrough pain. Anatomically, analgesics administered intranasally should target the trigeminal nerve via the mucosa of the middle turbinate. Therefore, it is likely that the effectiveness seen in our patient may be due to local effects as well as systemic effects. Reference: / Link to comment
sara-pezzini Posted September 28, 2015 Author Share Posted September 28, 2015 Thank you for the in depth reply! Much appreciated! Talked to my neurologist today and he knows about the cream, never prescribed it but will order it for me from the website (only doctors can order from that site and it's the only site that has it) he is curious about it as well and he thought it was great i mentioned it and want to try it. He also adjusted my pain meds again but this time listened to me and my thoughts. So will try that now. The liver and bloodwork came back fine, the levels in the liver are a little higher but that's to be expected and nothing to worry about. He is "glad" I'm doing the radiation and is hopeful for the outcome. I'm not doing the radiation on the nerve. I just want to ask about it when i have the first talk there because it is an option and i want their opinion. For me this is only an option if the facial nerve is damaged. In May this was not yet the case but i want them to check it at the procedure and if it's damaged this is a real option because otherwise the pain will only get worse and worse and i rather use radiation on it in that case but that is a last resort option. I just want al the info available to me right now. I'm a Virgo and do thorough research on what awaits and what might await me and want everything planned as best i can. Lol That's why your tip of the cream meant so much to me since it is not commonly known in Holland and i had not come accross it in any of the sites and forums i read here! Hope he gets it soon for me and i can try it and if it works i can maybe take less meds and be less zombie like! It did shock him when i told him i was depressed and feeling very poorly and he was very sympathetic to that and agreed therapy would benefit me. All in all a better talk with him as when he told me i had a tumor! (Which was mentioning the tumor first and the benign part later and then after a short talk saying i needed to Google what this tumor was exactly. No explanation, nothing Sheesh! ) Link to comment
sara-pezzini Posted October 2, 2015 Author Share Posted October 2, 2015 Update. Got the call from the gamma knife hospital and the first talk there is October 28th! I can then tell the doctor that i want the procedure done in January and no sooner, the assistant told me that's no problem at all. Seeing it on paper that they had discussed my tumor and agree this is the right thing suddenly made it feel very real and i am actually closer to tears somehow.... Link to comment
WithLove Posted October 2, 2015 Share Posted October 2, 2015 Sending some good thoughts your way, Sara. October 28 is my birthday - hopefully it'll be a good day for you and me both!! Link to comment
Seraphim Posted October 2, 2015 Share Posted October 2, 2015 That sounds very promising they are attending to it right away!! Link to comment
sara-pezzini Posted October 2, 2015 Author Share Posted October 2, 2015 Sending some good thoughts your way, Sara. October 28 is my birthday - hopefully it'll be a good day for you and me both!! Yes let's hope so! Link to comment
sara-pezzini Posted October 2, 2015 Author Share Posted October 2, 2015 That sounds very promising they are attending to it right away!! Yes at least the positive is that they agree that i am a good candidate for this procedure. And then they can answer all my questions and show me the frame and room and that way i will be less scared in January, maybe.... Link to comment
Seraphim Posted October 2, 2015 Share Posted October 2, 2015 I think increased knowledge helps to reduce fear as well. Hugs. Link to comment
petite Posted October 3, 2015 Share Posted October 3, 2015 So sorry you are going through this Sara I admire your positivity and hope! Keep strong. Link to comment
sara-pezzini Posted October 3, 2015 Author Share Posted October 3, 2015 Well it's more depression and fears but thanks lol I'm very depressed as stated in my other thread, going to a psychologist Monday because i can't do it alone. Shock and side effects of meds have a huge affect on me....not doing well at all I could care less if i don't wake up in the morning, thoughts like that.... Link to comment
petite Posted October 3, 2015 Share Posted October 3, 2015 The fact that you are fighting and already have a plan set to see a psychologist shows your hope, you haven't given up. And that is fantastic! Given the situation you're in I'm sure everyone would feel as you are, but you're not giving up! Link to comment
sara-pezzini Posted October 3, 2015 Author Share Posted October 3, 2015 Well for now it's more trying to see if she can help at all and also help with the entire radiation process but i am doubtful about the entire thing. The bad thoughts are getting worse and i cling to the hope that the pain will eventually go away but if it won't then i can see myself do scary stuff. I am actually already in that place where i can see myself do that and those aren't normal thoughts for me. I just want it all to go away...i bury my real feelings and pretend it's not happening. Just all in all a weird feeling and a huge shock. Most days I'm just like what the hell is going on? It's all going so fast, too fast and I'm on a roller coaster One day i think i have a tooth ache and now i get radiation for a tumor in my brain. Hard to get my mind around all that Link to comment
tiredofvampires Posted October 4, 2015 Share Posted October 4, 2015 Sara, maybe the psychologist will be able to help you with this, but it's very important you stay focused on the PRESENT MOMENT. If you stop and get very quiet, and look into what AT THIS VERY MOMENT IS MOST UNBEARABLE, is it the pain itself? Or it is the thought that it may not get better...and then...and then...? I think it may be a lucid moment to realize that the pain is bearable. You've been bearing it, as bad as it is! Your proof is that it hasn't killed you, and you're not insane, you're chugging on. What's UNbearable is the idea that it will always be this way. Which is what the fear is all about. If you take out that element, there is no fear in this moment -- just the sensation of pain. Pain on its own is not scary. It's the stories we have around it, and mostly, stories about the future. A thing that right now does not exist. The future does not exist right now, so your work now -- and it is very intense, difficult work -- is to try to detach the pain itself from what you recognize as your mind making up stories, which then result in fear about what your life is going to look like, which is the most crippling part of this. If you sit quietly for a half hour and just let your mind observe the pain all by itself (just the physical sensations, without judging them, just sort of recording them...burning, hot, shooting, etc.), and then notice when the fear thoughts come up, you'll see how there is a shift from feeling without all the layers, and then what happens when the fear is layered over it. Notice how many times and how lightening fast your mind will go from just the pain sensation back into fear-mongering mode. It's almost instantaneous. That's how the mind works. So if you try that little exercise, you can then try to become aware of that "habit" as you go about doing things. "Ah, there's that fear again -- going into the future, which does not exist yet." And come right back to either the pain sensation with just the objective recording, or some other thing you're feeling, or just distract yourself with something enjoyable, if you can. Over time, that tiny gap between pure feeling and fear thoughts can get a wee bit longer, and longer, once you're aware. And even if you don't notice that happening, you're noticing that your thoughts are continually on the future, which does not exist and that starts to take some of the power out of it. The fact is, you don't know what the future will bring -- and it may bring relief and recovery! This might be the worst part, right now, for all you know. So you have to consciously and continually keep making a blank slate of the future and putting it in a box, away. As many times as you need to, when you notice the process happening. I'm curious to know if you've gotten topical medication/transdermal creams yet? Link to comment
sara-pezzini Posted October 4, 2015 Author Share Posted October 4, 2015 I know logically your right but it's just that for the last 5 months the pain has gotten much worse and the meds have to be upped each time and i wonder where the end is? Because i know TN can get so so bad that people are screaming in pain and meds don't work anymore. And is not said that the tumor will definitely shrink from the radiation and if it does it's also definitely not said that the TN will be gone. So yes i worry, a lot because i know that if i have to live my life with excruciating pain every day for the rest of my life i don't want to. There is a story going around here at the moment of a young man in his thirties with a family and two young kids who has TN as well and they can't help him anymore and he plans to euthanize this Christmas, with the help of his doctor and the support of his wife and family. And it just indeed makes me scared for what i have to go through and i know i would definitely want the same! Also the meds are now helping each time but making me a walking zombie, that's also not a great way to live. But yes i know that is all future talk but for now i just can't help myself. I put all my hope inthe radiation and that in itself is terrifying me as well, but if (yes i know. Future talk) that doesn't work i know i will be crushed. But maybe the psychologist can help with the depression because in large part i know this is my depression talking, i just can't see a good outcome yet. The hospital called me to tell me that the mail address they were mailing the prescription to didn't work and the mail kept coming back. So she said they couldn't keep trying but she would send me the prescription and maybe i could try. I said okay fine, i can call then cause there are phonenumbers on the site as well from the professors who make the cream. Got the prescription on Friday when i got home only to see that they had the mail address wrong! So tomorrow have to fix my scanner and scan and mail the thing. So a lot of stuff is also just very frustrating! Lots of stuff like that and you can't mail the neurologist, al has to be done by phone and waiting and then through the assistant to him to her to me..... Tiring! Anyway tomorrow psychologist and hopefully getting the cream done! Then end of the week going to Sweden which does make me happy! See my brother and family again! My cute little niece! So it's not like i don't get excited about nothing anymore and the pain is subdued at the moment so that's fine for now. It's just that when stuff like that is over it's like i never was there or something, everything just passes me by and i feel like it didn't happen or was a very long time ago. But that's the meds. I'll think about all you said and appreciate it immensely that you take the time for these lengthy responses! Link to comment
Lucia Amman Posted October 4, 2015 Share Posted October 4, 2015 I'm so sorry Sara that pain gets worse. I can understand you're feeling depressed about this situation. Be *glad* we have the option to have a somewhat merciful way of opting out with legal euthanasia. But I hope it doesn't get that far! Link to comment
sara-pezzini Posted October 4, 2015 Author Share Posted October 4, 2015 Thank you. Yes it is good to know we at least have that option here if all else fails. Better than jump in front of a train at least. Though doctors don't do it easily or soon or gladly indeed. But i hope the radiation will help and the pain will go or stay manageable and the psychologist can hopefully help with the depression. Link to comment
Capricorn3 Posted October 4, 2015 Share Posted October 4, 2015 So sorry you're going through this. Wish there was a way to help but all I can do is send ((cyber hugs)). Link to comment
sara-pezzini Posted October 4, 2015 Author Share Posted October 4, 2015 Cyber hugs is better than no hugs! And much appreciated! Now at times i do miss someone being here for that, a partner who can also help with the decision making and stuff....but also just hold me at times Not that i want my ex back for just hugs though! Do have a crush on someone new lol Link to comment
sara-pezzini Posted October 23, 2015 Author Share Posted October 23, 2015 Little update again. I have an appointment next week with the gamma knife hospital for the first meeting. Have written down a lot of questions but not sure what to expect for that first meeting. When i got the letter from them and seeing it in writing made it very real....that hit me hard. Got the cream now finally! But last week for the first time in 4 months i am pain free! On meds but still, so the cream has to wait because I'm not going to experiment with the meds right now. Just enjoying the no pain! Pain will stay soon enough again so then i will use the cream, very curious about that! Sadly my insurance doesn't cover it and it is 100 euro's! But okay, if it works it's worth it...... Little nervous for the hospital thing..... Link to comment
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