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Topic: Does anyone take Neurontin? Please Help (Read 520 times) |
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Connie2
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Does anyone take Neurontin? Please Help
« on: Jan 28th, 2004, 1:58pm » |
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I'm so grateful to have found this site.
I'm a 37-year-old female who gets the Migraine and Devil combo. As a Business Consultant for an electric company, which is just a fancy way of saying that I get paid to talk to people all day. I find myself at the end of the rope so to speak… I’m frustrated, exhausted and have little energy to deal with the daily fight and fear on the days when I’m pain free. I fear that they will return. So the long and the short of it is that these things simply govern my life. I am in pain at least 15 days out of 30. I fight to concentrate, hide my pain, and appear ‘normal’ to co-workers. I fight to hide my pain from the love of my life and put a smile on my face in the worst condition. When I’m rocking back and forth on the bed he is not aware because we do sleep in separate rooms. (result of this shit) I do not want to burden him. I try to hide it. It’s both exhausting and a very lonely place to be… I find myself in the local ER about 3 times a month.
I don’t smoke, don’t drink, don’t eat anything that has been a known trigger, drink a ton of water. Due to my work environment, I am surrounded by loud and repetitive noise, fluorescent lighting, flickering lights, and look at a computer monitor for at least 8 hrs a day. There is no way around it other than to just resign. I don’t do resign well…
Yesterday, my Neurologist prescribed Neurontin and suggested that I stop using Imitrex. He said that the Imitrex and the use of Vicoprofen use is the cause of the rebound migraine. He wants me to gradually increase my dose of Neurontin and then prescribe Depakote and Lithium. So far, the side effects of Neurontin include diarrea, nausea, dizziness, poor coordination and I am finding it difficult to concentrate. I am going to call him and get o2. I’ve got a migraine right now and the new drug is not helping yet. I am awaiting the monster... My only recourse is to go to the ER right now.
Your thoughts PLEASE?
Connie
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thomas
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Re: Does anyone take Neurontin? Please Help
« Reply #1 on: Jan 28th, 2004, 2:44pm » |
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I don't take it but someone should be along shortly to help you........
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Lizzie2
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Re: Does anyone take Neurontin? Please Help
« Reply #2 on: Jan 28th, 2004, 3:43pm » |
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Hi Connie,
I am not on neurontin now, but I have been put on it twice...once to treat a chronic daily headache condition and once to treat restless leg syndrome. I was against going on it the 2nd time because I personally got some rather undesireable side effects from the neurontin. I was very tired all the time and my mouth was constantly dry. I had a few other side effects, but some of them aren't even the norm for that drug. I did give it a long time before going off of it, however.
I would say if you just started it, maybe call your neuro and ask about the side effects you are experiencing. Maybe over time they will go down as your body adjusts? That does happen sometimes, although not for everyone. I would recommend calling your doc and discussing the side effects you are experiencing.
I was also told by my neuro that I couldn't use imitrex due to the fact that it would make the chronic daily headache (with migraine) worse. The docs where I go told me that imitrex is not the best for migraine acute treatment because while you might get a little instant or temporary relief, the headache tends to relapse quite often. Has your neuro mentioned using DHE as a migraine and cluster abortive? This is one drug that can be used for either type of headache.
Just some thoughts! Take care!
~Lizzie 
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Connie2
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Re: Does anyone take Neurontin? Please Help
« Reply #3 on: Jan 28th, 2004, 4:25pm » |
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Thank you Lizzie,
What side effects did you have? I'll give him a call. I did try to call him but their line was busy for 25 min... I'll ask about the DHE as a migraine and cluster abortive. What is DHE and the side effects from that med? Do you often get the combo constant migraine with clusters hitting 3 to 10 times a night when there is a change in the weather?
Thank you for responding to me... Connie
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thomas
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Re: Does anyone take Neurontin? Please Help
« Reply #4 on: Jan 28th, 2004, 4:26pm » |
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on Jan 28th, 2004, 4:25pm, M8895 wrote:| What is DHE and the side effects from that med? |
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Dihydroergotamine. Works really well in iv form. Side affects are nausea for me....
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t_h_b
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Re: Does anyone take Neurontin? Please Help
« Reply #5 on: Jan 28th, 2004, 4:59pm » |
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Connie, you should notify your neurologist of those side effects immediately even though they are probably expected.
I took Neurontin when I had acute idiopathic brachial plexus neuritis and had all of the symptoms that you mentioned except for diarrhea plus I had somnolence. However, the pain that I was treating was pretty damn bad (didn't have CH back then) and constant. I was able to tolerate it because I wasn't working and could nap all day. Plus it was a hell of a lot better than the amitriptyline that it replaced. On that, I slept all of the time and just woke up long enough to drink juice and take another pill. If I didn't take anything I just cried all of the time and couldn't sleep or eat or anything.
I don't see how you could work and lead a normal live taking Neurontin long-term. (Probably a lot of people here do, maybe they don't have all the side effects?)
Maybe you could try something else. There are a dozen other meds you could try, plus melatonin and the fungal cure. If I were in your situation and Neurontin were the only thing I could take that worked, I probably wouldn't take any preventative and would just use abortives, assuming that they were effective.
It is possible that the side effects will lessen over time. How much are you taking? Maybe you could pull back on your dose after talking to your neurologist and scale back up slowly into a full dose. Talk to him, and if you can find a good pharmacist you might get some insight there, too.
Good luck with this difficult problem.
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| « Last Edit: Jan 28th, 2004, 5:01pm by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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CJohnson
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Re: Does anyone take Neurontin? Please Help
« Reply #6 on: Jan 28th, 2004, 5:03pm » |
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Forgive me, Connie, but I have not heard of rocking back and forth in bed as a good abortive strategy once an attack occurs. I know sometimes that's all we have strength to do, but a lot of the good people here claim that it is better to get right out of bed at the first sign of attack and go right into whatever their routine for dealing with the attck is, be it cold or heat on the neck, exercise, hot coffee, cold air, etc...rather than let the beast put you in a choke hold before you get up. If you do not feel you have a good abortive strategy, you will after a bit of time here.
Also, it is very common for clusterheads to feel shame and guilt for how their affliction affects their loved ones. However, sometimes the loved ones of cluster sufferers feel shame and guilt because they can't or aren't allowed to help the sufferer. You may want to read through the supporter's corner section and not hide, so much, the truth from the love of your life. You may find you are needlessly squandering valuable reserves of strength. If I am overstepping bounds, I apologize and will delete my post at once.
As far as stopping the 'trex if you said "Over my dead body!" with both middle figers firmly affixed in anyones face who tried to take it from you, you wouldn't be the first clusterhead to do so. Secondly, there are other triptans, like amerge and frova, which last much longer, and there have been some reported successes with people taking one before bed as preventative/abortives to get some pain free rest. This could give a break from maybe taking a shorter lasting triptan multiple times.
PFDANs
-Curtis
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Through water and fire. From the lowest dungeon to the highest peak, I fought the Beast. Until at last, I threw down my enemy and smote his ruin upon the mountainside.
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t_h_b
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Re: Does anyone take Neurontin? Please Help
« Reply #7 on: Jan 28th, 2004, 5:19pm » |
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Connie, Curtis is right about hanging on to your Imitrex or using another triptan. If the CH is a lot worse than your migraine you might be willing to pay for relief from the CH by inflicting rebound migraines on yourself. Bottom line is you should be involved in the decisions about your care and not just blindly accept whatever your neurologist tells you. You know more about your own body and your own medical problems than anyone else including your specialist MD.
Just out of curiosity, which did you have first--clusters or migraines--and could the migraines be shadows instead?
Curtis, sometimes it hurts so bad and you're so exhausted you can't even pace around anymore and all you CAN do is rock back and forth....
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Connie2
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Re: Does anyone take Neurontin? Please Help
« Reply #8 on: Jan 28th, 2004, 6:02pm » |
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Curtis,
Thank you and no you are not stepping over the line at all. When I can manage to climb out of the rack and grab the ice pack and hot coffee and put my head in the freezer I do it. As far as the trex goes you are right. There is no way that I can stop using the injections. The nasal spray helps too but the pills are useless to me. You also bring up a good point. I think that I may be selling myself short by hiding this thing and also selling my James short by thinking that he would be burdened. Thank you.
In response to another reply to which I am grateful for is that I started getting migraines at 16. I started getting CH at 24. Some times I’ll have a migraine that lasts for 3 days my longest being 32 days. The clusters cycle in between. When you talk of shadows do you mean flashes of light, blurry and tunnel vision and difficulty seeing at all? If not, please explain. I do experience all of that even with the migraines without CH. I can be migraine free and hitting rem time and wake up with the monster and then wait until the next hits… Then the migraine comes… Also, I can be suffering from a migraine and the cycle starts. Always right sided. Ice pick in the eye, numb face, and swollen eye, runny left nostril-the works.
In response to the question how much Neurontin am I taking, only 300 mg so far. I’ve just started. So far, I hate the stuff. I’ve tried Topomax and felt like I was loosing it. 25mg before bedtime.
Yes, I would take a migraine 24-7 if I could rid myself of CH! The doc told me that he could get rid of both… I have been doing quite a bit of reading but am quickly learning that I’ve got to take matters into my own hands. I haven’t heard of most of the meds and alternatives mentioned on this site. I am curious about amerge and frova.
God its nice to talk to you!
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thomas
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Re: Does anyone take Neurontin? Please Help
« Reply #9 on: Jan 28th, 2004, 6:04pm » |
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Amerge is a great abortive, if taken at the very onset of a ch, also less chance of re-bounds, unlike imitrex. Zomig is also another very good abortive. I would ask for some samples.......
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Lizzie2
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Re: Does anyone take Neurontin? Please Help
« Reply #10 on: Jan 28th, 2004, 7:05pm » |
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Connie,
Where do you go for headache treatment if I may ask? I noticed your location is Reading...is that PA? I'm from right outside West Chester. Some of what you are saying your doc says sounds rather similar to some of the things I've heard from the office where I go...that's why I was curious.
My major side effects with neurontin were dizziness, overtired, dry mouth/skin/eyes, my hair fell out some, weight gain, etc. It didn't relieve my chronic headache condition in the slightest, so after I got on a pretty high dose, I told them I didn't want to deal with it anymore.
To answer your weather question..sometimes it definately makes my migraines worse, but I haven't really been able to tell if it affects my clusters. I'm one of the 24/7 migraine patients for several years now...I think I would prefer to get rid of both! The clusters have definately made my daily migraines much worse because when I sleep for the migraine, it triggers a CH, and not sleeping from CH makes the migraine a lot worse. It's like a little double edged sword. I know a lot of people opt for treating just the CH and dealing with the migraines...that is kind of what I'm doing though we are trying to eliminate both types. I think I would be better equipped to deal with the daily migraines if the clusters were gone, but they, too, have worn on me a great deal over the past few years.
The reason I mention DHE...you can get it in injection form or in nasal spray form (migranal). The injection form tends to be more effective for most people. DHE is successful in aborting both types of headaches for some people. That way, you don't have to worry about the rebound like you do with the trex. If the trex is all you have, then go for it, but I would think you'd want to find something that could be just as effective without setting off another headache.
Side effects I get from DHE are nausea, occasional chest pain, and also the occasional worsening of my headache before it improves. However, I also got all these symptoms with the imitrex with the addition of tachycardia. Everyone reacts differently!
Take care and good luck!
~Lizzie
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Connie2
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Re: Does anyone take Neurontin? Please Help
« Reply #11 on: Jan 28th, 2004, 7:26pm » |
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Lizzie,
I am a new patient of Dr. Kolva in Reading Pa. He is pretty straight and to the point. He did say that it might take quite some time to find the right combination of meds to deal with both. It seems to me like one triggers the other and for me there is no particular pattern. It is disabling. Dr. Kolva said that I am both a chronic CH and chronic migraine case. He also said that for him it is the most challenging for him to try and treat.
After what I've just read about your experience with Neurontin, I don't know if it is worth dealing with the side effects. I can't lose my job and if I go in and try to deal with such detail feeling the way that I do, I won't last very long.
Question... Is this a recognized disability with the state? If something should happen could I apply for disability? I'm really down right now and thinking of future survival....................
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t_h_b
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Re: Does anyone take Neurontin? Please Help
« Reply #12 on: Jan 28th, 2004, 7:57pm » |
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Connie, shadows are a version of CH that some of us get that have almost all of the symptoms of the CH except for the excruciating stabbing burning eye pain, but they can last a lot longer than a regular CH. Especialy since you had the migraines first, your non-CH headaches don't sound like shadows. (When friends describe their migraines, they often sound a lot like my shadows.)
You might try melatonin to get rid of the CH (with your neuro's knowledge) especially since you're chronic. And get some oxygen NOW!
I don't know if the fungal solution affects migraines for better or worse but sounds like you don't have a lot to lose. Maybe you could book a weekend trip to Amsterdam soon so you wouldn't have to wait. (Obviously you would need to get advice from people who have experience with the fungi before considering it. There are at least a couple around here somewhere. I think.)
There are also a couple of people around here who have both CH and migraine--search the archives--and maybe start a thread about having both to share particulars and advice. ClusterHeads aren't always patient with errant migraneurs who show up on this site (we have the more intense pain but they get all the publicity) but since you have both, you should be okay! (Just saw "pubgirl" say she has both on the general board under the thread "Potential Cluster Newbie." Maybe you could start there.)
Also, whatever they're doing at the ER you might be able to do at home with proper prescriptions and 02 and save yourself the trouble of those trips to the hospital which must be difficult and aggravating at best.
Consider getting back in bed with your husband. When you wake up with a headache, leave the room, but don't let these damned things ruin your whole life. They have screwed up many relationships and many jobs.
And please keep telling yourself that you WILL find adequate relief an that it's just a matter of finding the right combo of meds. Don't get discouraged. You've already been diagnosed, have a neurologist (you can train him) and have reallized that you need to take charge of your treatment yourself. You're way ahead of the game already.
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| « Last Edit: Jan 28th, 2004, 8:00pm by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Connie2
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Re: Does anyone take Neurontin? Please Help
« Reply #13 on: Jan 28th, 2004, 8:09pm » |
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Thank you for your advice and your support. Yes, I am hurting too and I'll have a long talk with hubbie! I'm going to go and get o2 tomorrow. I will just keep on keepin on... I do understand impatience with people not fully understanding the true impact of CH. I'll be callin my Doc in the morning. I'll also look through the archives. I've got a lot to learn. Thank you so much. I'm off to bed and am hopeful for some lengthy rem time. I wish the same for all of you.
Connie
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kim
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Re: Does anyone take Neurontin? Please Help
« Reply #14 on: Jan 28th, 2004, 9:10pm » |
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Hi and Good luck****
Listen, Neurontin is a preventative that is more and more being endorsed - i took it last cycle - it MAY have helped some - i can't really say for sure - i'm episodic cluster sufferer and it's always hard to figure if meds were effective or headaches just "went away".
I don't know why your doc wants to eliminate imitrex as "abortive", but i advise you to read the abundance of information available at this site - it can only help. If you print out info and take with to doc, you can both troubleshoot.
o2 has proved an effective abortive for many - keep looking around and asking questions - there's lots of great folks that will be glad to help you use it in the RITE way....
Best luck and keep posting on progress!!!!
Kim
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