Dreams and lack of sleep

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About a month ago I was switched from tegretol xr to topomax because I was having too much break through pain. I wanted to try to go without any medication because I miss "me". I seem to have flare ups with changes in weather/pressure, flying and stress. At least these are 3 that I am starting to see a pattern with. I went to Arizona over Christmas and had a major flare probably the worse I have yet had (diagnosed in April 2012). I was able to get some a prescription sent to me for the pain to help get me through this flare and it did settle down after about 5 days. I did a bit of research and used a decongestant, ear planes in ears and took a pain medication on return flight home and that seemed to help. I don't know if flying in to the jet stream on the way out was more bothersome than flying back with the jet stream. It is amazing how much time I spend trying to figure out what triggers. I have atypical TN plus the stabbing pain.

I really hate taking any medication but my question is for anyone out there is that since being on the topomax I feel that I am not sleeping very much at all...I never feel like I am getting in to a deep sleep...I wake very often in the night and I am having horrendous nightmares. I don't even know where some of this stuff is even coming from. I wake frightened and scared. I almost hate falling back to sleep because I hate to go back to the nightmares. I was taking the medication at night but switched to taking it in the morning to see if that helped but it did not. Just made me have more difficulty in the daytime at work with concentration. I have an appt. in about 2 weeks. I just really want off all medication and only want to take something when I am in a flare up. I am a speech therapist and I hate how all these medications mess with your mind and thought process. Knowing what I do about the brain and how it works I am so frightened about what they are doing to me long term. I have never nor do I want to take any narcotic medications. I cannot tolerate most medications and have had severe allergic reactions (steven johnson syndrome).

Thanks for any input .

Darci

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Darci, truly sorry for your pain and troubles with the meds. I know they are not fun at all. For me, the Topamax was only tough on me for the first month and then calmed down a lot and doesn't bother me at all. I take it both morning and night. It helps me so much that I don't really have a choice and would most likely take it unless it was really bad, but then again I'm not working and haven't worked in just over a year. I'm not sure how you do. The doctors "think" I have ATN but can't be sure, and others on here have told me that it sounds like I have Occipital Neuralgia with the eye and back of skull pain, but who knows. I may have a touch of both. So far the Topamax (or the generic form Topiramate that I take) is the only thing that has helped me in the last 4 1/2 years.

I too have found I have to be very careful flying, as well as driving through the mountains here in CA with the pressure changes. It helps a lot to make sure to swallow frequently as that will make your ears "pop" and adjust to the pressure changes more easily. Stay hydrated when traveling as well by drinking plenty of water. If you can stick with it and it relieves your pain, those side effects may diminish or completely leave in time. It's really hard to say. Talk with your doctor about it, or your pharmacist. I've always found that the pharmacist is much more knowledgeable about most prescriptions as that is what they are trained for exclusively.

Best wishes,

Jack

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Thanks Jack. I am pretty tough and many of people think I have a huge pain threshold. I think I do too. I try to tolerate a lot. I think the topomax has helped the pain and I will talk to dr. when I see her but I really can't tolerate the nightmares. I am also or should I say previously a pretty active person who would run 15-25 miles per week. Since this diagnosis and meds I am lucky I run 10 miles per week. I do better in the summer when I am off of work and have less stress in my life. I have gained weight on the meds too which they said was not going to happen. But it was nice to hear someone who has stuck it out and doing okay. Maybe I need to break the pills in to one in morning and one at night? we will discuss at appt. I am going to be flying again to Phoenix in March so hopefully no flare up. It was pretty bad. Thanks again Jack. Had a mild flare today here in Wisconsin with a snow front that is going through but not too bad and don't need extra meds to get through it.

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Hi Darci,

I hear what you're saying about hating to keep on taking meds and the side effects etc and avoiding narcotics; I think we're almost all in the same boat with that, because the drugs can be very harmful - but you have to weigh up the benefit of getting some pain relief. Years ago I took charge of my meds because I didn't trust the doctors to understand the fluctuating severity of the pain or the effects of the drugs, and I decided that I will avoid taking them long term (as far as possible) and avoid taking a permanent 'maintenance' dose, and just stick to taking them for however long a flare up lasted. I think being off all meds during pain-free periods is a lot more healthy than permanently being on meds, as it gives your body time to recover, and you feel so much better during those pain-free periods. The thing you have to work out is when you're actually having a pain-free period - and you can only really discover that by slowly reducing your dosage, and if you feel no pain, keep reducing, but if you feel pain, then you have to stay on the meds and try again to reduce your dosage at a later stage. This way, if you have a six month or whatever period of time where you have no pain at all, you're completely off the meds for that time. Some people wouldn't agree with this strategy; some people prefer to stay on their meds permanently, so it's a personal choice - unless you have doctors who can't handle your input into your own treatment - some insist on permanent medication. As to your dreams, personally I seldom dream anymore, and that could also be as a result of the meds. As to the effects of the weather, being in Africa with our extreme summers, I find the heat and humidity is always a trigger for me, so I prefer the cooler months. All the best.

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Hi Darci I know a lot of people who have tried Topomax and including myself. We had good relief pain-wise, but common side-effects are brain fog (it's been referred to as Dopeomax) and weight loss. I took it for 7 months and could barely form a sentence and was so forgetful and completely lost my appetite and lost about 30 lbs and was just getting too skinny with no energy at all. I finally waived the red-flag and moved on to another drug. Most of the drugs we do have to give it time in the beginning and what seem like major side-effects seem to calm down after several weeks. It's a difficult thing weighing the benefits against the side-effects. I don't think I've been on a drug yet that didn't have a downside. It took me 2 years and 14 drugs or combinations of drugs before I found what gave me the best relief - with side-effect I am willing to deal with. It's a delicate balance. Of course, there are several non-drug related treatments and they all come with their risks - some of which are irreversible. Try to stay positive and keep as normal of a life as possible, it's a tough condition to deal with!

As far as the climate thing, one forum I belonged to tracked changes in barometric pressure (esp. high to low) and it is a HUGE factor for many. I dread those days when the pressure changes daily - usually with evening thunderstorms, it can bring you to your knees!

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Hi Darci, Nightmares are never good, harder when you're on medication and sleep deprived. They can be terrifying. Corny as it sounds, a friend gave me a few sleep and relaxation tapes. You know, sound of waves gently splashing against the sand, soft words providing imagery etc. They help wind me down and get into the right space for sleep with gentle imagery and sound. You may find these can help you go to sleep with a sweeter dream, or calm you after a not so great dream.

Smiley:).

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Hi Darci, Thank you so much for starting this conversation. I, too, have hated taking these medications, but they did reduce the pains. Carbamapezine caused major dyarrhea, but I slept like a log at 400 mg. I quit it, and switched to Baclofen, finding pain relief at 30mg/day, however it keeps me awake…dopey or loopy, but awake. About a month ago, I started going to a physical therapist who treats a friend who has bad migraines. She had told me that this individual had just taken a weekend workshop on the trigeminal nerve. I made an appointment immediately!!! The results have been very very hopeful. She found a place on my left cheek near my nose that was hard and distinctly different from the same location on my right cheek. She pinched and pulled it up and held it for maybe a minute or more, and both of us were able to feel the softening. She believes that there was a blockage of the lymph fluids that then put pressure on the nerve and caused the spasms. This was only 2 days ago, but I have been able to let the shower water hit my face (!!!), touch my left side of face again and feel NO twitching or twinges, or BTP. I am almost afraid to believe it. The day I saw her, I reduced my Baclofen to 2x/day, and a total of 20mg. My hope is to be able to get off them, and I so appreciate Maur’s input here.
Thank you all for sharing and best of luck, Darci. I feel I have gotten more REAL attention and help from an expert PT than from specialists, neurologists or my internist.

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Hello Darci:
Yes, stress is a very frequent trigger for many people, me included, and it can take weeks to recover from a severe stress situation flare-up. I had not considered the weather / pressure factor previously since I live in an area with few severe changes and I medicate constantly (which probably accounts for why I haven’t noticed a problem on airplanes). You didn’t say what doses of Tegretol or topamirate you are on. I have considerable experience with both. Tegretol (at up to 1200 mg/day, sometimes less, worked by far the best, with the least side effects, but my local neurosurgeon took me off Tegretol because of a blood test that he thought indicated an allergic reaction (leukopenia); however recently neurologist at Mayo in MN said that blood test was only at what he considered high end of normal range and he would not have discontinued use, but would only have monitored me more closely for a couple of months, anticpating it to fluctuate back to mid-normal range shortly. When first taking the Tegretol, the doc was very careful to titrate me up from 50 mg/day to the 1200 mg/day (taken 400 mg every 6 hrs, around the clock) over a 4 month period. Took a while to get my pain completely under control with no breakthroughs but VERY important to minimize side effects. At first I experienced some word-loss, memory, dullness problems (I am a retired accountant but an active artist by avocation and temporarily lost the ability to function creatively). But after a few months these issues gradually abated. I did gain about 10 pounds over the course of 2 years, despite my admittedly half-hearted efforts to keep from doing so. After discontinuing Tegretol on the recommendation from the loca neurologist, I was able to use only Cymbalta 30 mg/day & topamirate 50 mg/day for about 8 years with only rare breakthroughs. When I first took the topamirate. This level of meds left me with an occasional tickling sensation (not at all painful, just weird feeling) on my nostril & face where I had previously experienced TN pain. Not enough to warrant an increase in meds. The topamax at first caused an occasional tingling, pins & needles sensation in my hands but this went away after a couple of months. However in spring 2013 a multitude of very stressful family events accumulated and slammed me with a very severe relapse of TN pain. The Cymbalta was slowly titrated to 60 mg 2xday (absolute max) and the topamirate to 100 mg 4xday (yup, getting up at 2am for that 4th dose) but the pain kept increasing (and I learned why Topamax is also called Dope-a-Max and Stupe-a-Max!). Then Lamictal was added, starting with 25 mg evey other day, gradually up to 100 mg 2xday before the pain began to be under control. By then (Aug 2013) I had gone to the Mayo Clinic in Rochester, MN expecting to undergo some sort of surgical procedure. I was still having daily break-through pain and thought I had run out of pharma options. The Mayo docs assured me I could still increase the topamax and lamictal and informed me of some other pharma options, including Trileptal (which the local doc thought I shouldn’t take because of the supposed “allergic reaction” to Tegretol) and a carefully monitored return to Tegretol. They weren’t eager to try any surgical option until all pharma options had been fully explored and exhausted. What I discovered while there is that caffeine, especially when you are just on the edge of having your TN under contnrol, is very detrimental to TN. It stimulates the CNS and works contrary to the TN meds which work by tamping down the CNS (that is a very simple explanation of the mechanics). When I immediately went cold turkey on my two generous bowls of morning strong black hot tea and cups of real coca-cola that I have in hand the rest of my waking hours, voila! - no more break-through pain. As soon as I had even one glass of coca-cola with a meal, before the meal was half over I would begin to have those tingling electrical twinges in several of my teeth and along my nostril on my TN side. Pain is a powerful motivator - no more colas or tea for me!
So: to minimize side effects of meds titrate up VERY slowly; avoid / eliminate caffeine; avoid / minimize stress (I have no idea how to minimize the stress of having the TN pain, unless you live with an understanding wonderful caregiver! even then it is tough).
By the way, I was one of those weird people for whom Topamax had no weight loss benefit!!! I am still as plump as before I took the first one. However, that turns out to have been a great thing since I am now back at Mayo in the fight of my life, having been diagnosed with stage IV pancreatic cancer in Dec 2013. And since then I have reduced my meds to Cymbalta to 60 mg day, Topamax 100 mg day, Lamictal 100 mg day to help ease the load on my liver and have experienced no pain breakthrough. Will be reducing further over time (again, to minimize side effects of withdrawal). So, I don’t know how to account for the stress factor in this situation, since this has to be the most stressful situation I’ve ever faced.
However, I want to comment on a couple of remarks made in your original post and in response to your original post. First, it is my own experience and understanding of treatment of true TN that narcotics are really not that effective for treating TN, so there is no reason to go there. Second, I think it may be wise even if a person goes into what they believe is a “totally pain free remission” to take a very low prophylactic (preventive) dose of meds to prevent a harsh recurrence of pain, because it is generally better to keep pain under control than it is to try to bring it back under control once it flares up with a vengeance. But this is something you need to talk with your neurologist about, assuming you have a good one that you trust on this issue.
PS - Start aggressive chemo next week at Mayo. C19-9 tumor marker was within normal range & people with that reading respond MUCH better than others to chemo. I am in much better physical shape than most people with my diagnosis who start chemo, so I am very optimistic that I will do better than the dismal stats. The TV ad for Cancer Treatment Centers of America features a lady with my diagnosis who says her MD there told her he “saw no expiration date stamped on her foot” - she is a real person who is alive and well 11 years after first diagnosis; Mayo is at least as good as CTCofA! Pray for me everybody!

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Darci, Wisconsin huh? I just came to CA from West Michigan a year ago so I know all about the weather and pressure changes! They were a killer for me, and like Gail C said, the thunderstorms would bring me to my knees - often for 2-3 days at a time, and I love thunderstorms. Of course we still have the pressure changes here but not as severe and much less often, and of course the warm sunny days help immensely. I'm really sorry you are having those severe nightmares, that is really unfortunate. I guess only you can know what to do when it comes right down to it, and I know having to try to work only makes it like 100 times worse to deal with. I take (2) - 25mg tablets both morning and night and only notice a little bit of the "fog" I'm hearing about. I also take Buspirone and Fluoxetine for anxiety and help with the pain/depression. When I have breakout pain I can also take 75mg of Diclofenac up to twice a day. Now that is when I get foggy and do not drive, luckily I don't have to take that very often lately. (Knock on wood!)

I also agree with what Smiley said...relaxation tapes/CD's or MP3's really helped me. Even books on tape to help me sleep. I also really loved listening to Andrew Wommack if you like Spiritual teachings. He also has one of those soothing Texas drawls that will put you right to sleep in just a matter of minutes.

Wishing all of you all the best and much peace and healing.

Jack

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VAgirl,

Put your mind at ease...for worry is like anti-prayer. I and many others will be praying for you. Prayer is very very powerful especially if people come together in prayer. So put your mind at ease and know that you are going to be ok. Send me a friend invite and then your name so I can send your name to a prayer group I know and have them pray for you. Anyone else for that matter that is interested.

Best wishes,

Jack

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Prayers to VA girl. So sorry to hear that you are going through more. Prayers of healing being sent to you.

I have had a tough week at work with a co worker making a comment about me missing so much work when in reality I have only missed 3 1/2 days this school year with this and another 1 1/2 day for my sons wedding. It was real upsetting and set off a whole lot of stress in me as I go to work plenty of days in pain. Just what I needed. All of you have been so kind, comforting and I thank you for that. I guess until you experience something like this you really can't understand it. Hate knowing so many people have this pain. Thanks to all of you and here is to a good nights sleep and no night terrors.

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Hi Darci

I, too, am a speech therapist in the schools. I tried Topomax for about a year or two to try to reduce the number of migraines (TN was not diagnosed then). I was so sleepy, I think I once fell asleep during a meeting with parents! In addition, my expressive language was terrible. Could hardly string a sentence together. Short term memory deficits have plagued me, ever since I started the Topomax, even though I stopped several years ago. I go to work in pain quite frequently. One pain (migraine) seems to trigger the other (TN) and vice versa. I also find that when I fly my TN and migraines increase. So, too, from air pressure changes (so nice to be validated in these areas--thought I was crazy!) as well as increased stress. The TN is on the left side of my face. I have permanent numbness with pain in the left half of my top lip. Makes doing therapy a super challenge!

Topomax did not give me night terrors, but other meds have, and it's horrific. I was terrified to go to sleep every night. I'm very very sensitive to medications, and cannot get to a therapeutic dose which is why I am considering surgery. However, brain surgery is just so scary. UCLA is having a trigeminal neuralgia and facial pain symposium in early Feb. I am attending, and am hoping to learn something new or at least determine better questions to ask neurologists and neurosurgeons. As you said, knowing about the brain and what can happen when one messes with it whether through medications or surgery, is really frightening.

Take care

Camia

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Hi Darcy,

I feel for you, and hope that I can offer some constructive help.

It's good that you are identifying your triggers because this will help you manage your pain better. Keep listening closely to your body and see if you can identify anything else (for example I've learned to talk without moving my jaw too much, but if I get angry I always have a pain attack. By paying attention to my body I realised that when I'm angry I shout and my mouth opens wider, and triggers an attack. Or when I am in extreme pain, I clench my teeth, which exacerbates the pain, so I've had to train myself to relax in the pain.)

Knowing our triggers helps us avoid, or manage them.

As for the nightmares, look at them closely too. Maybe when you wake up from one, write down everything you can remember about it, or draw a picture of it. This may help you identify what exactly you are dreaming about and help you to stop the nightmares. (When my daughter was young enough still to believe in the tooth fairy, she created a new character, the dream fairy, and before she went to sleep at night, she would ask the dream fairy to bring her good dreams! One night I was woken by her yelling out "You're not a good dream, you're a nightmare. I didn't ask for you. GO AWAY!!!!!)

As for the meds, I'm soooo with you, I hate taking them. I was on full dose gabapentin, and topirimate (tegretol) and a high dose of baclofen. They barely took the edge of the pain, but ruined my life... I couldn't drive, read, think, hold a conversation, remember stuff etc etc. So I decided to come off them. I'm now on minimum dose gabapentin and low dose baclofen, and have stopped the topirimate. Yes, I'm in constant pain and have severe pain attacks, but I've got my life back, because I'm not a zombie any more. I just have to learn to manage the pain. I've used mindfulness techniques to help with that.

The key component of Mindfulness is acceptance. And paying close attention to the present moment (http://www.bangor.ac.uk/mindfulness/about.php.en or http://www.breathworks-mindfulness.org.uk/meet-vidyamala are useful links.

And distraction techniques... the busier I am with things I enjoy, the less I notice the constant pain (the lightning attacks I just have to ride through). It still hurts but it hurts more if I do nothing.

This is a debilitating and frightening disease and we need to make it as easy for ourselves as we can. If you don't want the medications, then talk to your doctor about titrating down safely, and know that you will be able to manage life without them. There is help for you.

Hope this was useful. Go well.

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Hi Darcy, me again. I've just thought of another thing that could be useful for you. That is a Pain Management specialist. Do you know if there is a pain management clinic near you? Have a chat to your doctor about being referred to one. This would give you access to occupational therapy and other experts in pain management.

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Darci, don't worry about your co-worker comments. You have to learn to grow a skin of teflon when it comes to other people and their comments with this TN nightmare. Other people really just don't understand, even those in your own family, especially when you look so normal. I'm still astonished that I'm hearing that so many of you women are still working, but then again, I am one man that has always known that the female was truly the tougher sex in a lot of ways. Men may be stronger physically, but I saw my mother raise 9 children and she's still going at 81!

I worked all through 2012 with excruciating pain at times and I had missed a lot of work, at times up to 4, 5 or 6 days a month but I couldn't help it. Add in the doctor appointments and it's a miracle that I wasn't fired. So please try not to stress over it, as that will only make your pain worse. Refuse to let someone else ruin your peace and your day.

Blessings and Peace,

Jack

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Hi everyone,

Im new to this site too. I lived with TN since 2006 im a 32 yr old male and been taking trileptal and now switching to keppra 1000 mg 3 times a day. The trileptal was lowering my sodium and making me feel terrible. I so tired of meds but it helps. So now im planning on getting Gamma Knife Surgery, my neurologist sounds pretty confident, but im concern that things wont go well. Any suggestions? I would appreciate.

Thank you