Hi and welcome to the Chiari forum,
Does ur DH have a DX of Chiari Malformation or Syringomyelia?
What is the root of his nerve pains?AS with those of us with Chiari many times meds like Neurontin or Gabapentin do little to nothing for the pain b4 we have surgery, but can help post op....
Since he does not have medical insurance he may want to try to see if he qualifies for a clinical trial to get a DX and treatment.
My husband has been on Effexor for a while. Also, Neurontin for nerve pain. My question is would nortriptyline be a better choice for him. He says the Neurontin is not cutting it. Any comments appreciated. He is on the generic for of Neurontin. No health insurance.
any other feed back anyone on this med? I just got prescribed it today and am going to start trying it tonight.... Redkim any other feed back for me?
I know what your saying..and if it is affecting you mood you should be concerned. It is an anti-depressant but those things can cause the reverse affect so you really have to be careful!!! You know what it normal for you to feel so I would definitely tell you DR about this. To tell you the truth I have a very strong opinion about not vgoing on drugs like these b/c they can really mess up everything (I've been there). But I though maybe I was being too stubborn..I have been in pain for months and refused to take any prescription meds. Now I'm thinking I should have stayed with being stubborn!! Oh well...we'll see what the DR has to say:)
I wish they would talk about these things. My insurance is very quick to issue a prescription. I think the medicine is affecting my moods too. And my health concerns for that matter. I have been feeling depressed, do I have a reason too - sure! But in the past I have taken bad news much better then I am now. Maybe this is the reaction I should be having, I mean I should be sad and depressed. But it's not like me, lol.
I'm sort of on the same road too with the gabapentin..it is making me feel dizz(ier), very tired and even a little nauseated. I noticed that my head seems to clear about 12 hrs after I take it so I am going to try and take it earlier tonight too. I am worried that I am taking something that has side effects of what I already have but I spent $100 on the stuff so I am determined to give it some time to see if it works. Definitely frustrating!! I would tell your NS that you are on it...I was actually thinking that if I decide to keep on mine that my NS should know too.
No discussion on how this would affect my Chiari either (post op but still...) so that is what my GP visit is for and I am going to voice all my concerns. You should definitely do the same!
Carolyn
Hi Kim...so sorry this just keeps on going for u.....
as for the dr that rx'd these meds u would think she/he would want to consider the chiari and how u may respond as a result of the meds....I am confused.
I pray u feel better soon and can enjoy ur art and skating again soon : )
"selma"
Hi all, thanks for the replies. I have been on Nortriptyline for about two weeks. I did the first pack of 10mg dosage and seemed okay, although tired. Thursday I started my 2nd booster pack of taking 20mg. Friday night I got a horrible Chiari headache, so bad I was extremely nauseous, it hurt so bad that I started to cry. Which hurt it even more.
My husband told me he wanted me to stop taking them because they were making me too sleepy. I just need to take it earlier in the night so I give it time to wear off while I sleep.
On Monday I e-mailed the DR who prescribed it because my arm pain was very severe and my hand/finger was more swollen then normal. I really thought the medicine was helping, but the burning pain is still there and just as bad. Granted I haven’t been on the medicine long enough to know if it’s working.
The doctor called me back and told me she thinks I have Complex Regional Pain Syndrome (don’t know much about it) and is sending me for a bone scan and to see a pain management doctor. I told her about the very bad headache and she told me Nortriptyline is supposed to help with headaches.
Yesterday I was sitting on the floor at work and my back was very, very sore. Last night I went ice skating and got a headache (base of skull) so went home. When I got home my legs felt very weak.
Today my vision is blurry…
I am still taking the Nortriptyline and will see what happens over the next two weeks. I start the 3rd booster pack tomorrow of 30mg.
I totally see your point Edward. The doctor who prescribed this I had only seen once and was referred to her by my NS. We didn’t really talk about my Chiari and how I would respond to medications because of it…I better e-mail my NS and let him know what’s going on.
Well, first of all:
Chiari has an issue with circulation in the brain. TCA's build up, in the brain, as well as other organs. With the reduced circulation, that means they are going to build up more or faster. It also means, they are not going to be as consistent. Further more, they are cumulative. Like many drugs, you need to go "off" of it, for a while. This is to help reduce overdose potential, and also to regain the bodies normal reaction to it.
In addition, continued increase dosages have more of a rebound effect, than a therapeutic effect.
Also, it alters the chemical balance of the brain, and no Doctor has ever maintained a patient study to see what effects their daily routines have compounding these changes....
Hello! My PCP prescribed it for my HAs. It's nice because it helped me sleep, and when I got the HAs they didn't hurt as badly. I could still feel the pressure, but that I could deal with. After a few days, though, I started getting REALLY lethargic during the day, to the point where my DH freaked out and made me stop taking them. Now they say I'm "allergic" to it. Oh well. It was nice while it lasted...
HI Kim...sorry I am not familiar with that med...please keep us posted on how u do with it.
"selma"
Lisa..that was my problem too with antidepressants...they would work for a bit then stop, then my DR would up it..and then same thing. Finally, it got up so high that I would just feel like a zombie and that's about all it did for me. For me, the depression and anxiety has just got sooo much better after getting a dx...I think it was all caused by not feeling normal but I had no good reason why.
Redkim...When you're in that much pain, you have to try anything!!! I really pray that it works for you and eases the pain. I have had success with the PT...more with muscle strenthening but honestly, sometimes I hurt so bad that I don't want to do the exercises but then when I make myself..I really do feel better. Mostly, that is because a large part of my pain is muscular caused by weakness and cramping. So the exercises basically tires my arm or leg out and then it leaves me alone for awhile. Hopefully you will find this helps as well!
Carolyn
I don't do well with med's. I seem to have reactions more often then not. Maybe on allergic reactions, but I experience side effects, so I am always skeptical and unwilling to take med's.
I also have several of these syptoms anyways so I don't think I would be able to tell if I was having a reaction, unless it was a new symptoms...like someone else said. And who wants any new symptoms with all the ones we deal with everyday...!
I am going to give it a try, cause I don't know what else I can do. My arm pain is so bad that I told my doctor I think of breaking it so I wouldn't have to use it for a while and I could give it a break from everyday life. Sometimes I am in tears over it and I didn't cry after my decompression surgery.
I start PT on Thursday for my hip and my doctor told me they would try to work on my arm later but felt that PT wouldn't help with the pain. I don't want to be in pain, so I wil try the med. I wish there were other options though.
i am on this started out on 25 mg now up to 75 mg
i has NOT helpt with the pain but has helpt my depression..waiting for Neuro to call me back...
also i took this med before my decompression surgery and it did work well for pain for me, was up to 100MG at that time, it worked when nothing else would, the only issue i had was after i reached 100MG--it seemed to stop being effective.and the ringing in my ears seems to be more frequent!
I agree, I have no idea how it helps with Migraines but it really has lowered my monthly count of them! I used to get a few of them per month and now am really averaging only one per month. I don't really like taking the medication but I will admit that I think it did what it was supposed to do for me.
I am also very happy that the larger dose did not work for me because I don't like taking meds so at least keeping the dose low makes me feel better. I usually have problems with just about every med I have tried so I am amazed this one seems to be ok.
All I can say is that I have several of those serious side effects now...so I don't think I could tell the difference, which would worry me!!
My experience over the years on antidepressants before I knew I had Chiari...were not good ones. However, everyone is different and we all respond to things differently. It looks like it works for Zygy so it is probably worth a try, just be aware of how you feel and if anything gets worse or different than make sure you take note of it.
Notriptyline is a TCA (tricyclic antidepressant) so basically it prevents the reuptake of 3 of the mood affecting neurotransmitters, causing the levels to stay elevated in your brain. For depressed individuals, it is thought that they don't have a high enough level of the NT's so this helps correct it. TCA's are know to cause more side affects than SSRI's too. I'm not sure how this helps migraines, or if the drs even know, but it does seem to be an effective drug.
All said and done, a physical medicine doctor should know best and I would assume that she will be following up with you on a regular basis?
Carolyn
I am on 25mg per day (low dose) to help prevent migraines. They started this when I was learning about the Chiari. The only things that I really noticed with it was when I started it I had a dry mouth for a couple of weeks and it would cause the difficult urination. When they tried to up the dose on me I had to go back to the 25 mg because I could not urinate well at all and it was getting worse day by day. It might cause me to snack more or I might just be prone to the munchies right now??? I do think it helps to prevent the migraines though so I suppose I am happy enough. It is difficult to know sometimes exactly what a med is doing to you. Especially when some of us already have some of these things happening that are listed!!