sara-pezzini Posted June 17, 2016 Share Posted June 17, 2016 When I'm in full attack it doesn't stop at all, it's just all day long trying not to move anything in my face, obviously accidentally do and the lightning shocks strike for minutes on end. So exhausting! I've cried so much! And this would be for around 3 weeks like that and then it was completely gone! This was before the diagnosis and before the meds. .. Such a weird and scary pain! And even doctor 's don't know everything about it.....but glad we live in this day and age, and not 100 years ago! Yikes! Link to comment
Seraphim Posted June 17, 2016 Author Share Posted June 17, 2016 Absolutely, it brings pure pity to my heart to consider people in times gone past and now who have no medication. Link to comment
Seraphim Posted June 19, 2016 Author Share Posted June 19, 2016 Just got back from the hospital . Slow release does not work for me AT ALL. Full bore horrible agony . Nope nope nope. Going back to the other way. Link to comment
sara-pezzini Posted June 19, 2016 Share Posted June 19, 2016 Oh no! I was thinking you're up late/early! Yeah you gotta find what works for you and it takes time. You can combine them as well, the other ones during the day and a slow release in the evening so you're good for the night! That helped me for months! Link to comment
Seraphim Posted June 19, 2016 Author Share Posted June 19, 2016 OMG Sara I am dying. I can't take it. They have me a reg one but it may take 2 days to get back to the blood level . OMG OMG Link to comment
sara-pezzini Posted June 19, 2016 Share Posted June 19, 2016 I know sweetie, i know! It's pure hell! But you will get through it, one step at a time! maybe an ice pack will relief you somewhat? Link to comment
sara-pezzini Posted June 19, 2016 Share Posted June 19, 2016 Take it easy as much you can until it kicks in. Lie down, don't do all too much cause that just aggravates it, stress is bad as well so try, try to keep yourself as relaxed as you can. Which i know with this pain is pretty much bull, but anything to stop it from getting even worse. If you're not responding to cold maybe you will with warmth, try out both! Link to comment
Seraphim Posted June 19, 2016 Author Share Posted June 19, 2016 Oh God, they gave me a reg Cabarmazepine but it is gone to take a day or more for relief . They did another prescription for the reg. Oh my goodness yes the ice gives a bit of relief. God help me. Link to comment
sara-pezzini Posted June 19, 2016 Share Posted June 19, 2016 Maybe they should try you on the brand tegretol! That has helped me so much more than regular carbamazepine! You'll get through it but i know what hell you're going through now....sleep is impossible right? Aww hugs! Link to comment
Seraphim Posted June 19, 2016 Author Share Posted June 19, 2016 The ice has helped a lot. Oh my goodness thanks. I might be able to get some sleep now. The nurse was saying that the slow release was just not enough fast enough. Link to comment
sara-pezzini Posted June 19, 2016 Share Posted June 19, 2016 Aww so good to hear! For me it's cold as well, works better than heat. I also have even more problems in summer than in winter. Hope you'll get some sleep! Sleep on the other side! Link to comment
Seraphim Posted June 19, 2016 Author Share Posted June 19, 2016 Thanks so much Sara ! Link to comment
Seraphim Posted June 19, 2016 Author Share Posted June 19, 2016 You were a lifesaver last night thank you Sara! After freezing the back of my head and my jaw I was able to go to sleep. I was so so grateful ! Being back on my other medication is also very helpful. I guess I need to fast acting and not the control release. I have had three of my fast acting now and there is a significant difference. The hospital gave me one at 2:30 I had one at 8:30 and I had one at 1:30 and my last one at supper. There is an extra pill in there from the hospital but that's OK. Link to comment
Seraphim Posted June 19, 2016 Author Share Posted June 19, 2016 They also gave me a prescription for the fast acting and to check up with the specialist this week. Now that I can make some sense... Lol. And this time the hospital treated me with much more respect because I have a diagnosed condition from their specialist at the hospital. I wasn't given the runaround and treated like a nut. However I described the symptoms from the Dilaudid it they gave me last time and they said I'm allergic to Dilaudid so there's not much they can do other than my prescription. Link to comment
sara-pezzini Posted June 19, 2016 Share Posted June 19, 2016 Im so glad you're feeling better! Was thinking about you all day.... And glad to have been a little helpful! Good that the hospital treated you more seriously now, benefits of having it diagnosed indeed. Will they still do an mri? I think they have to and should! Because on that mri they can see if a little vein is hitting the nerve and if that's the case they can do the janetta surgery and you'll have such a good chance that it's over then! But i think they really need to do an mri! because you just don't know, you know? But thank god you're doing better!!! Link to comment
Seraphim Posted June 21, 2016 Author Share Posted June 21, 2016 I am back to soups and soft foods again. Sigh Link to comment
Seraphim Posted June 23, 2016 Author Share Posted June 23, 2016 Well, now the pain is waking me up and 600 mg is not working either . Have to make the move to 800 mg. But how do they do that ? 300 in the morning 200 at lunch and then 300 at night? Link to comment
sara-pezzini Posted June 23, 2016 Share Posted June 23, 2016 Can you break it in 200 each time? In my case it was 200 morning lunch dinner and before bed. But maybe best to consult doctor? Link to comment
Seraphim Posted June 23, 2016 Author Share Posted June 23, 2016 This pain is so depressing. I can't eat I can only drink. So I bought a Lot of those protein and meal drinks. I can only have things that require absolutely no chewing. After the attack that lasted three hours this morning the relief after it went was so palpable I actually started to pour sweat. It is so hard to be at work and be in this kind of pain. Pretty soon I'm gonna have to go up to 800 mg. I will ask the pharmacy how they do it. Link to comment
sara-pezzini Posted June 23, 2016 Share Posted June 23, 2016 Oh yeah i know that all too well! Proteine drinks and maybe porridge, i drank porridge a lot. I also know how it is to just go on working, i never took a sick day with all that pain but it's so hard! I just hope it passes quickly again for you and that 800 does the trick. However i come to find that in time the dosage keeps being needed to go up....sadly! But it's also finding what works for you, maybe carbamazepine isn't the best anti seizure drug for you and maybe you have to try another one. But that depends on your doctor as well.... Carbamazepine is the one each patient gets to try first but it doesn't work well for everyone. And for me it was huge when i switched from generic carbamazepine to expensive brand tegretol by novartis...world of difference! Take care, i know how much it sucks! Hugs! Link to comment
Seraphim Posted June 23, 2016 Author Share Posted June 23, 2016 Yeah porridge is out . It gives me severe diarrhea. So I am down to drinks meal replacement. I have to wait a month for a switch anyway . Insurance absolutely won't pay for a third switch in one month . I am so depressed. Link to comment
sara-pezzini Posted June 23, 2016 Share Posted June 23, 2016 Aww yeah i can imagine! It's a pretty crappy situation to be in and a terrible disease to deal with! The only thing that got me through all those weeks of pain before i had meds is just take it one day at a time and try to ignore it as much as was possible...as if electric shocks in your jaw can be ignored haha but you get what i mean. Try to put it to the back of your head as much as you can or you get crazy. Keep with the ice packs! And maybe that will help a little bit as well. And then just increase to 800 obviously cause doc said you could! Call pharmacy to check but i think it's 4 times 200,which makes sense cause then you'll have something to get you through the night as well so you don't start the day with pain. I'm pretty sure it's that! Link to comment
Seraphim Posted June 23, 2016 Author Share Posted June 23, 2016 Heat definitely makes it worse . And I can't have anything blow on my face . For me it's not so much electric shocks as feeling like I'm being stabbed in the face with an ice pick . Link to comment
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