Do I have Trigeminal Neuralgia
Posted , 11 users are following.
Without going through the last 6 weeks of hell, let me be brief to see if anyone can help me. I've had head and face pain so severe I'm not sure how much more I can take. My last contact with a doctor was an ENT that stopped me when I was trying to explain my symptoms, and said he believed I had Trigeminal Neuralgia. He sent me home with Gabapentin, and said he would get me in to see a Neurologist. My appointmen isn't until Dec 15th. I was told to take one 100 MG pill three times a day. I thought this was it! I went for 3 days with no pains. Then in the early morning hours I woke up with the pain back. Usually my pain is 10++++++. This morning it was about 8-9. I did not get the burning, searing pain in the top of my head this time. It was confined to my forehead, eye, teeth, and an ache near my ear. I took 2 Gabapentin, and a pain pill I was given at the ER at an earlier visit. The pain lasted for about 2 hours. I woke at 6 am with a dull ache near my ear. A feeling of pressure. Since I could not take anymore Gabapentin that soon, I stayed in bed till 7:30, and then I took 2 more Gabapentin, and 2 Excedrin migraine pills. Within one hour, I was pain free. Is it okay for me to up my dosage without the doctor saying it's okay? Does what I have sound like Trigeminal Neuralgia? My pain covers my front teeth on the left, inside my nose, under my eye, in my eye, over my eye, and into my forehead. Then I have these streaking pains that run back and forth very quickly from front to back on top of my head. It's either very, very hot, or very, very cold. To me, it's like a pinball machine that slings the ball back and forth, back and forth. And the pain is severe! I have pains in the roof of my mouth, that lead up to my eye. I'm embarrassed to say this because I've never seen this written anywhere else, but I get this strange smell in my nose when this happens, Now, I'll probably be taken as a crackpot, but that's just the way it is, My pains are so severe, everytime I have one of these attacks, I pray that it will be the last one, I beg...please Lord, don't let me go through this again! I'm not sure I can keep going through this. Can anybody relate to what I've said? Does this sound like Trigeminal Neuralgia? Am I putting myself in danger by increasing Gabperntin? I know most people take a lot more than this, but am I doing it too soon? I'd take the whole bottle before going through another attack! Thank you for any information you can give me.
0 likes, 99 replies
susan33651 sandy5221948
Posted
Hi, Sandy,
First let me point out that I am a trained nurse, I have 30 years experience, most of it in ENT and surgery, but I have met many patients with many weird, 'wonderful' and rare conditions over the years.
So let's discuss your pain. It could be TN but it may also be a type of neuralgia that involves the nerves inside your mouth, research the types of neuralgia, there are many of them. It could be the both of them, it is not unheard of for patients to have two rare conditions at the same time!
It could be Migraine, but I would be concerned at the intensity of the pain and the nature of the pain. Migraines do usually last longer than a few hours but it is not uncommon for them to be short lived, i.e. less than an hour. And yes some sufferers get light, noise or smell auras before a migraine.
It could be Cluster headaches. If you get this pain again and attend the ER ask for high flow Oxygen and a shot of IM Pethidine. This is THE BEST and only PROVEN immediate treatment for this type of headache. It will stop the pain within 5-15 minutes. If it doesn't then it is highly unlikely to be Cluster headaches.
I doubt that it is Sinus related. Sinus infections more often than not cause pain at the roots of the upper teeth especially when you bend your head downwards so that your head is parallel to the floor, you would also get a sense of pressure. They rarely, if ever, cause pain in the eyes. I have had sinus infections many times and the worst one I had caused an abcess in the sinus under the left eye and a degree of cellulitis and that didn't cause the level of pain you describe.
Be comforted that most brain tumours would be identified by the investigative scans you have had already, plus they are rarely painful. The most common sign is nausea and vomiting. Sometimes there is a tendency to lose the ability to speak or use the right word. Ones hands and other motor skills become less coordinated, these symptoms often occur long before any pain and pain itself is very, very rarely the first symptom.
The symptom which concerns me is the strange smell. Such smells are usually precursors to seizures. Seizures can take several forms. For instance: Blank staring absences, petit mal, grand mal, and even the type where the individual is awake but behaving erratically. Most seizures are accompanied by some degree of muscle twitching and urinary incontinence. They are, however, never accompanied by pain, such as that which you describe.
One other possibility, which is very long shot, is some sort of parasitic infection/infestation. There are parasites which can enter the brain via the bloodstream, they can be extremely difficult to see on scans. Once in the brain they have access to the nerves that deal with all of the senses. I have nursed patients with different parasitic worms in various parts of the body, including the ear, eyes and the brain itself. My son's primary school teacher's husband had a liver fluke infestation which caused a fairly small cyst in his brain, he was in such severe pain he could barely open his eyes. Specialised blood tests can identify some of these infections. And, yes, they can cause some horrible symptoms including extreme pain. It would be logical to make the connection to your type of pain if such parasites where indeed present and actively stimulating the nerves in question. Rest assured they are treatable!
I agree that you MUST make this your first thing to tell the Neurologist. Make a list of the exact order of things that happen with these attacks. For example: Strange smell, back and forth pinball pain and so on in the order that they occur. Make a note of anything that might be a trigger for these attacks, for instance, bending your head in a specific way, turning your head in a specific way, lying with your head in a specific position, a particular noise and so on. Anything which might be connected, list it. If necessary give the list to the doctor. Good luck with your appointment.
Speaking of which, there is a criteria with which patients are given appointments, it is by clinical need as indicated by the referring clinician, whether that is the GP or another specialist, also there are many other people in just as much dire need as yourself. I had to wait 30 weeks to see a Rheumatologist and I work for the NHS!! Sometimes there may only be one specialist available. So please be patient and in the meantime persevere with your medications as prescribed.
Best wishes and feel better soon.
colin69485 susan33651
Posted
Hi Susan
You say that you're a trained nurse and I'm a trained biologist, so I was surprised to read your comments regarding sinuses. The Frontal sinuses and Ethmoid sinuses, the ones above eyes and between the eyes, can become blocked, often due to infection, and will cause pain above the eyes, especially in the region of the eyebrow ridges. I'm a chronic sufferer from sinusitis and the first indications I get that my sinuses are probably infect again, is a 'headache' type pain across the forehead and eyes.
i find salt water aerosol a sprays helpful but have still needed 2 polyp operations over the the years. I totally agree with your sentiments regarding the need to be patient and to have faith in the system. Too many people seem to be 'playing around' with some powerful drugs that must be monitored professionally. I use my pharmacist a lot, we have a great relationship and he really does know about drugs, their dosages and possible interactions. Colin
susan33651 colin69485
Posted
Hi,
You're quite correct about the Ethmoid sinuses, but I was referring to the Maxillary sinuses, I just reread my post and that wasn't made very clear!! My own experience with sinusitis is that my Maxillary sinuses always get infected, so I suppose I was focused on that! 😁
I also worry about the number of people who adjust their medications without apparently discussing it with a doctor or pharmacist, frankly it scares me. But then I suppose they have discussed an action plan with the specialist beforehand? Let's hope so.
Best wishes.
Andraste susan33651
Posted
that's exactly why when someone asks should i increase my level of (insert drug here) and i know you can cause i take way more then they do but i'm not gonna say that because i don't know anything about the person. imagine somone taking a low dose because they have to build up to a stronger one reading that "someone said" they take a higher dose so it's gotta be ok, right? yea, no.......immediately taking a higher dose is not smart, it's not good for yur body firstly, and secondly what if it's not helping? well you've already taken the highst dose so ther's no way to go any higher because you started at a high dose to begin with
colin69485 Andraste
Posted
You are so right! It certainly isn't smart to mess about with different doses of a drug without professional guidance, no matter what a friend or relative may advise. Pain killing drugs are affecting some part of our body to reduce the pain and this comes with a health warning. We often become dizzy, tired and unable to think logically. The body may slowly adapt its chemistry given time but this cannot happen if a drug is taken in excessive amounts to soon or if we suddenly come off the drug without gradually reducing it first. My personal advice, based upon experience is: 1. Always follow professional advice and stick to information given with a drug. 2. Alert your GP or pharmacist immediately you have any concerns. 3. Don't drink alcohol even if someone tells you it's okay. Good luck - we all need a bit of it when we're in pain because it can be so miserable, can't it?!
sandy5221948 susan33651
Posted
Thank you for responding. I did some more research after another person sent me a lot of info on TN. I found a video of a woman having an attack of TN, and that could have been me in that video! She chanted oh, oh, oh over and over....she begged for the pain to stop. "Stop, stop, please stop". Wailing got louder, and louder. I started shaking just watching her suffer, because I knew exactly what she was feeling. Now, there is no doubt in my mind that I have TN.
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sandy5221948 colin69485
Posted
I understand what you are saying, and in most cases I would agree with you. Trigeminal Neuralgia is not like anything I've ever heard of, or seen. If someone told me to cut my left thumb off and I would get relief, I'd do it. You aren't concerned about what's going to happen down the road, you just want the pains to stop, and you will do anything to reach that goal! Having said that, I did call my pharmacist last night and she okayed what I was doing. The most shocking thing was that she knew everything about TN, and was so sympathic. I'm still shocked at seeing 4 ER doctors, and none had a clue! Today I was able to speak with the doctor's office that prescribed Gabapentin, and they said it was fine to take what I was taking. They do not want me to increase it any more. I am fine with this as long as it keeps my pains under control. I'm one of those people that has considered suicide. When I'm not in pain, I have no thoughts of that, but during the horrible, painful attacks, I'm so close to putting a potato in the exhaust of my car, and crawling in it. So, I'm perfectly willing to chance taking another Gabapentin, if it means some sort of side effects, verses taking my life, the decision isn't even close.
Andraste sandy5221948
Posted
i too have though of suicide durring an episode because im used to 48 hours of intense pain but this was going on a week and i was ready to put a gun to my head because of pain+plus i was so sleep deprived i was hullucinating small dark shapes skittering on my walls. at that point i should have been hospitalizd .i literally have to be unconscious for me to not feel pain, i've taken most every pain killer known to man not 1 took the pain away, not 1!this was all before i got it managed with tegretol . 200mg twice a day for me, sometimes i take 2 more at night if i wake up knowing im gonna have an attack, my tn is so weird in that it occurs after i've been asleep for a couple hours, the pain sneaks its way into my dream and then i literally get shocked awake.lit feels like someones taken a power line and split it in 2 and attached each end to either side of my jaw and hit the breaker, i also take depakote too
Andraste
Posted
i've had this ever since the 4th grade, i also have had ideopathic peripheral neuropathy in my calf muscles since that time too. i was breached in my moms womb, my umbilical cord was wrapped aound my neck for 2 days i think but before i was born i flipped the right way. i had learning disabilities when i was little. was dyslexic. i've had multitude of problems. i've wondered for years if my neurological problems don't stem from my birth
colin69485 sandy5221948
Posted
HI Sandy. I totally understand and my heart goes out to you, if you're in so much pain! I certainly didn't mean to flippant or lacking in sympathy. My point was for general consumption really and in my experience drugs will be more effective if we build up the dosage in increments. Often banging in a heavy dose all at once is counterproductive. Really glad you're having success with your pharmacist.😊 Colin
sandy5221948 colin69485
Posted
Thank you for your kind words. I knew what you were saying, and I would never take more of any other meds...but this is different. After having 2 attacks back to back, I had to believe I wasn't taking enough. I noticed even children 12 years old could take more than me, so I wasn't too afraid to up it to 200 MG.
I'm praying for all us to be pain-free!
Sandy
sandy5221948 Andraste
Posted
How horrible...4th grade! I'm praying for you!
sandy5221948 Andraste
Posted
There you go! I"ve read that TN rarely affects you while you are sleeping, but my attacks happens exactly like what you just said...after being in bed a couple hours. I've been sleep deprived too. After 2 nights of attacks, I feel asleep in the big padded rocking chair, and boom, woke up with another horrible attack. I was beginning to think lying down was causing my pains, but I was sitting straight up for that one. I'd also put lots of pillows in my bed to raise my head to sitting up, but that didn't help either. There is no pattern that I can find for my attacks. And you're right. Not one pain pill in the world takes this pain away!
Andraste sandy5221948
Posted
this is whe it gets really weird, lemme knows if yours is anything like mine. sometimes i can beat it by staying awake after i feel it in my dream sleep IF i don't have an pain WHILE IM AWAKE
but the second i go back to back to sleep i have pain, wake up no pain, fall asleep pain and this is back to back. like as soon as i fall asleep bam! wake up and stay up pain free, accidentally fall asleep bam!
one would think i would have painboth awake and asleep. hell, it happens to me and it confuses even me!! but it makes sense that IF the painly only comes at night that in early onset i can beat it by staying awake....that kinda makes the sense that doesn't lol
sandy5221948 Andraste
Posted
I can't say that I've found any rhyme or reason as to how they come on. I have good nights, and sleep all night long, and bad nights with no sleep. Attacks during the day too. Right now I have more attacks during the night. I snore. I grit my teeth. I have sleep apnea. Any of these could be a trigger. I thought about getting one of those gurads that keep you from gritting your teeth. I'm just thinking of anything I could do that might help me. I do wish we could find what it is that we all have in common besides the attacks. Maybe we could beat this thing.
Andraste sandy5221948
Posted
i've trid bitguards, the ones you get at the store and the 1200 dollar kind you get at the dentist where they make a mold of you're teeth. neither worked for me but that's not to say they won't work for you....
sandy5221948 Andraste
Posted
Last night I had another attack. Actually it happened at 4:30 this morning, I remembered what you said about staying awake, so as soon as it started I got up and took my meds, and just stayed up. This attack only lasted 15 minutes. That's the shortest attack I've ever had! It wasn't as severe as the others, either. I don't know if it's because I'm on medication, or if staying upright helped me. I stayed up for another 30 minutes, and went back to bed. I slept till 8:30. I'm curious about something. When I was going to the ER, my temperature was always 97.2 to 97.5 all 4 times. I've been noticing my nose gets cold prior to my attacks. This morning before I got out of bed, I had my husband bring me the thermometer. My temp was 96.3 I never register a normal temp, but when I finally reach something over 98 I feel my best knowing my attacks always occur when my temp is lower. Has anybody else noticed low temps being associated with TN? Maybe I just have another problem going on along with TN, but I'd love for other to comment on this.
Thanks,
Sandy
Andraste sandy5221948
Posted
i swear something i've read says that your body cools offs as you selep and starts getting warm readying you to wake up.that being said my temp is around 97.4 normally,.i've not noticed my body temp is either cold or warm when i have anattack
Andraste sandy5221948
Posted
sandy5221948 Andraste
Posted
I can't help but wonder if this isn't something we could all have in common. Looks like we both have normal body temps in the 97 degree range. But start taking your temp before you get out of bed. I'd bet you have an even lower temp. I'm going to sleep with a heating pad tonight to see if I can keep my body temp up, and avoid an attack. I'm just determined to find something to keep these attacks away. There has to be something that triggers these attack that we all have in common. Good night, hope everybody has an uninterrupted, pain-free night!
sandy5221948 Andraste
Posted
sandy5221948
Posted
Slept with the heating pad over my head and face, but it didn't do a bit of good. I had a very mild attack at 1:30, and I jumped out of bed. It only lasted between 10-15 minutes. Then, I had another one at 6, hopped out of bed, but still it lasted 35 minutes. It was more intense, but not nearly like the ones I've had in the past. Body temp was 97.1. That may not mean a thing, but I thought I'd mention it.
Tnhurtsme sandy5221948
Posted
I have trigeminal neuropathy mine hurts constantly but at night time i don't have any pain if i wasn't on the mix im currently on i would be in extreme pain all day long but at night my nerve turns off no pain
Stupid1 sandy5221948
Posted
My temperture is always 87.5 since I hadd ovaries removed.
God bless
us and keep us and give
Andraste sandy5221948
Posted
oh that's great news! you attacks are lessening. it may be that our TN'S are more related then unrelated since yours happen at night as well. how long do your attacks usually last?
susan33651 sandy5221948
Posted
Hi,
When I get a really bad episode of pain I find that I simply can't do anything, speaking sends the pain level from a 10/10 to 100/10!! I just lie very still and take whichever medication is due at the appointed time keep my eyes close (because moving my eyelids makes the pain worse with the addition of shocks in the lids) I can't eat or drink anything because moving my lips, and biting and chewing more recently, sends shocks and horrendous stabs up through my lips and nose and across my cheeks. I try not to make any noise simply because I have two wussy pussies that run away at the slightest noise!! I get to the point where I feel nauseous and faint, I sometimes vomit with the intensity of the pain which of course sends the pain stratospheric. At some point, usually after anything from a few hours of this cyclical stab/shock a bit of a gap stab/shock and so on to as long as several days it goes as suddenly as it started.
I think it is fair to say that we all suffer equally as horribly and have had thoughts of doing something foolish, in my case I was self-medicating with drugs prescribed for my husband but desperation makes one foolish no matter how intelligent or one's qualifications!
I saw the Neurologist yesterday who confirmed that I do indeed have TN, but then added that I also have Idiopathic Stabbing Headache and Migraine, oh joy. I knew I had Migraine, I've had those since about 14/15 years of age. I know the difference between the pain of TN and Migraine. With Migraine one can function to a limited extent, TN on the other hand totally incapacitates the sufferer, BIG difference, not to mention the different nature of the respective pains. He made a point of telling me that to date up to 80 different types of head pain/headache have been identified, 'so what, do you suffer with any one them, no, it matters not how many there are, just take the pain away' I was thinking to myself. LOL, he was very nice so I remained quiet and polite!!
I hope that you and all the other TN sufferers out there find some way of dealing with their varying and unique attacks. It truly is a b'stard of a disease.
I don't know who made the comment about body temperature, but yes you do cool down by a degree or so at around 3 - 4 am. And yes temperature, ambient or applied to the face, can trigger or relieve pain, But what works for one may not work for others. I find cold triggers TN and heat relieves it to a limited extent whereas another forum member finds that cold relieves it. It's the same with medications, we all have different metabolisms and existing health issues, (and allergies) which will affect how the treatments for TN work in each case. So please, do check with your doctor, pharmacist or specialist before changing anything.
Good luck and Best wishes to you, Sandy, and to all TN peeps.
sandy5221948 susan33651
Posted
Susan, It's rare to find someone that has these pains for hours like me. I keep reading it only lasts for seconds to minutes, and I tell myself, wouldn't that be great! Since I got on Gabapentin my pains had only been 1 1/2 hours at the most, and not nearly as severe. That changed yesterday, when I had one that lasted 4 hours. Even after it was over, I had that dull pain for many hours after that. I tried to listen to the nurse who told me to try to make it as long as I could for my first dose in the mornings so that I would be taking them later at night. My attacks were only happening over night at that time. I'm not saying anything bad about that, but most nurses, and doctors don't know what we go through. Think about it. Only 145,000 people have this condition, and only 14,000 are diagnosed each year. What's the chance that your doctor even knows about this? I saw 4 ER doctors, a GP at the walk-in clinic at my regular doctor's office, and then I saw an ENT. He is the one that stopped me from going through my symptoms, and told me I had TN. He gave me the Gabapentin, and then went out of town. Now, I only have his nurse to talk to. She has been getting advice from another ENT in the office, but I'd bet my life he knows very little about TN. But, getting back to what I was going to say. I will never wait to take my pills again. I researched it, and it says the pain relief only last 5-7 hours. No wonder I had a full blown attack yesterday. If I have to get out of bed after 6 hours and take another dose I will! I'm finally getting in to see a neurologist on the 15th, if I can stand it that long. Since there are so few of us, I don't have much confidence that he's ever treated a TN case. If I have to have surgery, I will go to one that specializes in this, no matter what state he's in. I'm not trusting just anybody to mess around my brain.
Thanks for responding to my post!
Tnhurtsme sandy5221948
Posted
sandy5221948 Tnhurtsme
Posted
I'm so sorry for you! I know how that feels, and it's just awful! How long have you been on meds? How do you take them? I'm just hoping to be put on something that lets me be able to go out of the house without fear of another horrible attack. I had to give blood yesterday for an up coming physical. My attack started just before I was called back. I made it through that, then had to walk to my car. By the time I got there, the pain had gone completely away. Then I had to go for a CT scan, and the pains came back. I stayed in the car and had my husband check me in. It was bad pains! They called me on the phone when they were ready for me, and I walked from the parking lot, and straight back for my scan. As she was doing my scan, the pains went away. I walked out with no pains! Then I decided, that maybe walking would stop these attacks. I live an hour from my doctors, so we had a long ride home and the pains came back. I had my husband pull over for me to walk, and it did help some. I was able to get home. I tried walking once I was home, but it didn't help much. Once it passed, I had that dull face pain for hours. I took Excedrin for miagrains and after about an hour, I was much better. No pain meds help me when I'm having an attack, but the dull pains I have after that, I can control with over the counter meds.
Andraste sandy5221948
Posted
sandy5221948 Andraste
Posted
Yes, all night long, over, and over and over! The first morning I went to the ER, I had been up all night long with pains searing my face, over and over. Streaking burning pain up into my head. When daylight came I tried to walk outside and vomited over and over. That's the reason I can not keep going through this. I'm stressed to death, and can't take it anymore!
Andraste susan33651
Posted
oh lord, i just reread your comment, you actually faint from the pain? bless your heart that must b a doozy! man that sucks to have both an attack of tn and those kicking butt migrains. heck i'd prolly faint too!gawd that must be awful. im sitting here imaging my tn PLUS migraines OH HECK NO!!!!
sandy5221948 Andraste
Posted
Oh gosh no....I don't faint! I wish the heck I would if I wouldn't feel the pains anymore.
sandy5221948 Andraste
Posted
There is a youtube video of this woman having her attack, and that could be me. I'ts titled "My wife during her trigeminal neuralgia attack". I don't count like she does, but I beg, please stop, please stop, and I say no, no, no over and over again. And I say oh, oh, oh...with every breath, and I get louder, and louder! I do this all night long, and my husband is by my side the entire time! I'm 68 and he's 72. I'm not sure how we can keep functioning during the day. I have burning searing pains from where my eyetooth goes into my guns, through my nose, into my eye and in my forehead over my eye. The episodes that sent me to the ER had the burning, burning pain that raced back and forth into my scalp along with the other pains. I think my nerve is so messed up it's now affecting 2 of the 3 parts to this disease.
susan33651 sandy5221948
Posted
Hi,
I have attacks which follow a pattern of hundreds of cycles of 2 or so minutes of shocks and stabs with a gap in between before the next cycle of two minutes of stabs etc, this pattern is what repeats for hours and hours! Sometimes it's just a few seconds and that's it for a couple of hours. I have gone days without any stabs or shocks. The one thing I have found which helps is to take the medication on time, set your phone alarm and be religious about taking the medicine, it has made a big difference for me. Rather than days and days of pain in a row, it's several hours instead!!
Best wishes.
sandy5221948 susan33651
Posted
I don't know which would be worse, constant pain, and then it's gone, or being stabbed over and over with pauses! I agree about taking the meds. You just have to keep it in your system, and it's crazy to think you can go 12 hours and not have the pain come back. If you take it 3 times a day...take the first one at 7 am, last one at 7 pm, that medication will be out of your system in 6 hours, then you gotta give them time to start working. That's probably the reason I've had pains 2 days in a row after noon.
Tnhurtsme susan33651
Posted
Tnhurtsme sandy5221948
Posted
Tnhurtsme sandy5221948
Posted
susan33651 Andraste
Posted
Oh yes, Migraine since about age 14/15 and TN for about 12 years (51 now), I thought at first it was a variation of Migraine but when the pain in my eye got worse and spread to other parts of my face I realised it had to be something else. I get TN on both sides of my face too! Plus I have some sort of Autoimmune disease similar to Lupus. there must be a cosmic prankster up there (maybe even down there! LOL).
When the TN attack take holds in my left eye I really suffer, it's this that incapacitates me for hours and hours, sometimes days (but less so since starting medication). In the last few attacks I've felt horrible, faint, clammy and overwhelmingly nauseous to the point of actually vomiting and almost passing out. I almost fainted at work a couple of weeks ago and had to sit for a few minutes till the pain went, thankfully it was a short attack. I last had a migraine several months ago. I try to stay in a positive frame of mind.
Best wishes.
sandy5221948 Tnhurtsme
Posted
Your symptoms are exactly like mine. My attacks start at my eyetooth, then into my nose, worse pains in my eye, then just over my eyebrow, and I have what you call lightening strikes from where my hair starts to about half way back. My pain is burning, burning, burning and my face swells up. I can hardly open my left eye. Since getting on Gabapentin, I've only had one attack that came close to being that bad, thank God. Oh, I forgot to mention, I have pain in the roof of my mouth that feels like it burns straught up into my face, and eye. I honestly thought I had an abscess in my eyetooth with so much infection it was going straight to my brain, and the pus was so much and so thick it was causing my face to swell. This disease is a nightmare!
Stupid1 sandy5221948
Posted
I took started only taking Gabby alone, but was still suffering and zooned out, all day long, and was taking it b4 I went to sleep and it did knock me out all nite/:was zooned out all day, bcause I have always had insomsonia.
I informed my Neurologist and he then added to the Gabby 900mg, 150mg Ocarbanazapine b4 bedtime and when I woke up the next day I was not zonned out.
Adjusting meds my Neurologist told me to make adjustments as I see fix but I always call him and let him know when I am going to do adjustments. He then told me if I am in really bad pain to take more, I only hadvto do this one time.
One night Very stressed I took 1200mg
With one 150mg carbinazapine.
I was really in pain, it worked wonders but it took almost and hour b4 it started wirking..
Since I have been taking the 900 mg Gabby with 150 oxcar, I am no longer zooned out in daytime, that added med made a difference.
My pharmacist told me that my regular doses was low and she said that most patients take higher doses of Gabby as high as 1800 for Trigeminal Neuralgia sufferers, she also said I was taking a lower doses than other patients.
I am praying deligently for all suffers of this dredful illness.
God,
bless us and keep us and give us peace
sandy5221948 Stupid1
Posted
I had my yearly physical today, and tried to talk to her about adjusting my meds to 4x a day. I only take 200 MG of Gabapentin 3times a day. It does not stay in my system when I have to go so many hours over night without. I had 3 attacks between 12 noon yesterday, and 2:30 am this morning. Her answer was to take it every 8 hours instead of every 6 hours. She just didn't get it. I've read it only stays in you system 5-7 hours, and she wanted me to wait 8???? I will finally get to see a neurologist next Thrusday. I'm just hoping my meds hold out till then. An ENT diagnosed me and referred me to him. He gave me this medication, thank God! I"ve only been diagnosed with this for 9 days. I'm still having attacks too often, but they are not the killer pains I was having before. I'm thankful for that, but I'd really like to be better controlled. I'm afraid to go away from home. I dread going to bed because it's rare for me to get to sleep all night long without an attack. My prayers go out to everyone suffering from this disease from hell!
sandy5221948 Tnhurtsme
Posted
Yes, the Gabapentin. Now, when I feel it coming on, I take a Jalapeno pepper slice from the jar and hold it on the roof of my mouth (I have pains that go through my mouth and into my head) then I chew it up and swallow it and I drink some of the juice. I've tried those peppers about 5 times now, and it's worked for me every time. Ten minutes or less, and my pains are gone! I wish others would try this and let me know how it works for them. To me this is a miracle!
laurel3865 Stupid1
Posted
sandy5221948 Tnhurtsme
Posted
Yours turns off at night, and mine turns on. If I don't have an attack during the day, I know I'm in for it that night. I can have one during the day, and still have one or two at night. I think God that mine or controlled and are not nearly the painful ones I was having before.