Just started my latest trial of adding Neurontin to the mix. I took 100mg capsule in the evening as it is said to cause drowsiness. I didn’t feel anything, and the half life is very short…5-7 hours, so had a great sleep and woke up feeling pretty much like “normal”. The doses for Neurontin can go as high as 3000-4000mg, so I’m at a baby dose.
I started a book on Brain Chemistry by a new doctor I"m seeing. INterestingly, he says there are 10 pathways/circuits in the brain and he can usually figure which one is malfunctioning and causing problems very quickly. He then starts his patients on a protocol of 3 different options, labeling them 1 through 3 in the order he sees fit. He can tell from the reactions (good/bad) whether it’s hitting the right circuits. He says if you have an adverse reaction to antidepressants, he feels it’s telling that the brain doesn’t want that. He also says that when you give the brain what it’s “missing”, a lot of times you can see a positive reaction within a few hours. When I told him how I felt on Lexapro, and that my other doctor told me to stay on it despite me feeling bad, and getting worse, he said it should have been obvious to try another med. When I stopped taking it, I hit a really low point…I think more than just discontinuation…he said the wrong med can cause a “destablization”…it wasn’t until after that that I started getting unrelenting anxiety. I think he looks at the patient as a mystery to be solved, and he loves solving it and getting people better.
I know this doctor is a phychiatrist, but since migraine/depression/anxiety seem to like holding hands, I figure my stuff is based on brain chemistry, and am going forward with new protocol. I see him tomorrow, and we will go over my labs. I’ll keep you guys updated!
When I told him I get good relief from Klonopin, he says he believes some people have low GABA, and isn’t hesitatant to keep them on it. I think quality of life is the key here…some docs get you on benzos, and you start feeling better, and then Bam…they stop letting you have them.
Sounds really intriguing Kelley, do you know any more about what his protocols are? or whether he’s published anything on his theories? I’d be really keen to read more.
I’m about to start Pregabalin (Lyrica), be interested to know what he’d suggest combining this with?
Do keep us posted
The book was written in 1995, so I’m sure there are new drugs that aren’t in it (like Cymbalta, which I am on). He starts with the antidepressants, and goes for 2-4 different ones, giving the patient xanax and Stelazine, for possible “adverse affects”. So for instance, he might choose Zoloft, and then Paxil, and then Prozac…he tells patients to start with the one and if there is a definite adverse affect, you can use the xanax or stelazine to combat feeling badly. So one would try the medication, and if it wasn’t successful within 3-5 days, you would have a washout period before trying the next.
FRom his book:
Try each medication one at a time for 3-5 days, but discontinue sooner if an adverse reaction occurs. Until more is understood, it is important to compare briefly an assortment of antidepressants. I am amazed to watch how each person usually prefers one strongly over all others, and that best results occur typicall within a day. In my opinion,limiting medication trial to 5 days or less helps to identify superior matches and eliminate inferior ones: an antidepressant may have parts that can be misread by the brain and body and cause adverse reactions.
HIs protocols are to start with Antidepressants, then move to mood stabilizers, then ADHD meds, then Gaba enhancement(benzos)/Adrenaline Blockers(beta blockers), then hormone/thyroid/estrogen…
the book is really easy to read and available for next to nothing on Amazon. The Successful Treatment of Chemical Imbalance, by Dr. Martin T. Jensen.
He also mentions people that initially do well on AD’s and then get worse, could be helped by “destablizing controllers”…including low dose Depakote and LIthium.
I will know more tomorrow…
So, how have you been feeling? I know that you are taking a small amount of Klonopin. Has that helped alleviate a lot of your dizziness and off-balance? And how are you feeling from the Neurontin?
I seem to have plateaued on the nortritptyline. I have gotten as high as 25mg with a nice amount of relief, but certainly not enough. I have been trying 30mg for the last few days and I feel very agitated and upset on it…also the off-balance is a little worse. I am rather dismayed as I was hoping to find relief here and not have to start over. My doc is reluctant to prescribe Klonopin with Nort…
Anyway, would love to hear back from you…I am feeling really bummed…
I am not sure why your doc wouldn’t want to prescribe the Klonapin…they are totally different drugs that hit different access points in the brain. Some docs are just really uncomfortable prescribing benzos. Luckily, mine are pretty free with it, and I"m very conservative with my dosing. You may want to find a different doctor.
The one I am seeing tomorrow has really got my fascination up…I am hopeful to find out some more info on this brain chemistry stuff, and be able to share what I learn…fingers crossed.
I wouldn’t get too down on the Nort…some people need more than one drug. You might find another class of meds in low doses as well that will clean up the reast of your symptoms.
I am doing okay on Neurontin. I may feel a little dizzier than usual, but it is just getting into my system…don’t want to judge. I did not take any Klonapin today, so I want to see how my body reacts to just the Neurontin. AFter I talk with doc tomorrow he may tell me to try to add it back in, or give it time. I’m a little more tired than usual as well…but nothing bad…
SOrry you are bummed…I totally understand…my advice for now would be to try and add another med after a week or two at the 25mg NOrt…(I took 20mg Ami with my Cymbalta when I first started)…if you find you are getting agitated, it might mean the Norephinephrine is kicking in and you may not need more of it…the samething happened to me on Remeron and I’ve been hesitant to go up on Cymbalta for the same reasons. Did you ever try a plain SSRI? Docs are prescribing SSRI with Tricyclics these days…especially in low amounts…just FYI…
I am very curious about your new doctor too. Being able to parse out areas of the brain that need help would be great. And if I don’t find help with Dr. Goadsby up here in SF, I might travel south to see your doc…he’s in Laguna Nigel, right?
Your insight made me feel a lot better. You are right, I might be getting too much Norepinephrine at 30mg. And I think that my doc is reluctant to prescribe the Klonapin because he is a otologist and neurotologist. Therefore, he is sensitive to the vestibular system and he worries that Klonapin will suppress the vest system and not allow my brain to compensate. He also mentioned that he worries about the interaction between Nort and Klonapin…it was only a message he left so I will find out more when I speak to him in person.
Otherwise, I have to wait until Dec 14th to meet w/Dr. Goadsby and investigate new things…
Oh, and, I tested a couple SSRIs that sent my anxiety through the roof and I had bad side effects too…Zoloft, Lexapro and Buspar…
Thank you again for making me feel better.
Glad you are feeling better…Lord knows this stuff can get you down…
I don’t know about my dizziness beingfrom the vestibular region…mine seems to stem from the visual field…and I think almost 2 years of dizziness if pleny of time to let it recalibrate,if it was going to…how long can one wait?
You got side effects on Buspar?? That didn’t do much for me at all, but did help anxiety in the beginning.
Zoloft is known to be “stiumlating”…I think it hits Dopamine as well as Sero…
YOu can switch from Nort to Ami straight across…Ami hits more SEro than NE…If you wanted to try it…
If you want to come to SoCal, I’ll meet you for lunch. I Live in las vegas, but travel there all the time. Southwest Airlines has tickets on sale right now too…!
Hi Kelley – this is all really interesting stuff. Sorry I didn’t get back to you yesterday – work was manic. This doc sounds very cool. What’s the book titled?
The book is called “The Successful Treatment of Brain Chemical Imbalance”, by Dr. Martin T. Jensen.
I’ll post after my appt tomorrow with the latest…
Interesting indeed. I wonder on what he bases his hypotheses? Does he base this on his own personal observation with the various drugs? I wonder how he controls for his own expected outcomes etc?
Kelley – I’ve noticed over the years that I have become more and more intolerant to meds/ vitamins/ supplements. It’s infuriating. I wonder what he would say about that? For example, I used to take a magnesium supplement called Ultra-Muscleze for over a year that I seemed to tolerate really well that is until earlier this year when I realised it was really ramping up IBS. When I stopped for a while, my gut stopped. I started and the gut started. I did this repeatedly and kept getting the same result so I ended it. But then earlier this week I decided I’d try the supplement again at a half dose because it also has B vitamins in there and I used to get a nice pick up from this stuff. The last 3 days have been hell with severe headaches way beyond normal. The penny dropped this morning on the way to work (after another dose :shock: ). Even a vitamin C tab I used to take causes headaches now. WTF is going on? It is freaking me out that I get less and less tolerant. Even the Prothiaden caused a terrible headache last week. It’s like Paxil has sensitised me more and more or is it the disease itself that has progressed? No idea. My head is so bad right now again that everything is blurry in my vision.
Scott i’m sorry you aren’t feeling well. This is very interesting. I have always been intolerant of drugs. I’m going to post a new post to let you guys know what i’m going through right now after talking to the therapist.
Chris – most migraineurs aren’t great with meds to begin with. But I think I’m (we are both) right off the bell curve with this. A real pain.
Must be something in the global air. I went off the hummer big time today… major meltdown that could only be contained by 600 mg Advil and Cyclizine plus bedrest (on top of my daily Topamax doses). At first I thought it was cough syrup that I took last night but it also could have been stumbling across yet again another food trigger (potatoes?).
Scott - there is a magnesium product called Jigsaw that can be purchased online that is the only slow-release magnesium formula that I know of. I haven’t tried it yet. It’s advertised for fibro patients. The supposed benefit of the product is that the magnesium doesn’t dump into your bowel nearly as quickly so it prevents the onslaught of IBS symptoms. Your other excellent option is to be taking a soluble fiber solution such as Heather’s acacia fiber (online as well) which dissolves in water and helps IBS/digestion/constipation, etc. The website is pretty good, and the product was formulated just for this purpose… I have used the product for some time. It can be remarkably effective. Regarding drugs and supplements: be on the alert for the inactive ingredients and fillers since many people are sensitive to those and may not realize it… cellulose, gelatin, magnesium stearate, etc.
I hope you all feel better soon. Yikes. This condition is so formidable and variable.
Thanks M&A – very good info.
Best … Scott
I’m not sure this can help you, but maybe it will. I was having horrendous reactions to most foods and any supplements that I tried to take. It kept getting worse and worse, to the point that I would eat something or take a supplement and I would get really dizzy almost immediately. You should know that prior to the onset of MAV, the only thing I was sensitive to, was chocolate…it would make me sneeze. I was used to eating everything! Anyway, I was sent to Dr. Ellen Cutler who started the Bioset clinic. She focuses on righting our digestive system through specific digestive enzymes and clearing food allergies and sensitivities. She finds that many ailments can be related back to digestive issues. So, since I have been seeing her and taking the digestive enzyme, I can pretty much eat everything again. She has not cured me of the MAV, but she basically helped clear my sensitivity to food and supplements. I no longer get a reaction when I eat things or take pills. Also, my stomach had been really screwed up and I would say within a couple of days, I no longer had stomach pain or diarrhea…I became quite regular and my skin cleared up immediately. Like I said, I still have some of my dizzy, off-balance symptoms, but they are no longer related to food. I hope this helps you…for me, I was devastated to lose the ability to eat foods I like. If you like, I can ask Dr. Cutler if there are any Bioset practitioners in Australia.
How does she do the resting/clearing?
I have digestive issues that cymbalta has
I would be happy to come to sf… One of
My fave places!
She uses digestive enzymes and she uses a mix of accupressure to help with the clearings. Here is a link for you to check out. I was skeptical about it before I went in, but she is the first person that has been able to help in a long time. And she is really a great person too. She has people flying in from all over to see her.
— Begin quote from “monkeygirl”
I was sent to Dr. Ellen Cutler who started the Bioset clinic. She focuses on righting our digestive system through specific digestive enzymes and clearing food allergies and sensitivities. She finds that many ailments can be related back to digestive issues. So, since I have been seeing her and taking the digestive enzyme, I can pretty much eat everything again. If you like, I can ask Dr. Cutler if there are any Bioset practitioners in Australia.
— End quote
Hi Kim – very interesting although I’m a bit of an acupressure/ puncture skeptic. I am willing to look into this given your result however with the digestive enzymes. The Paxil I have been taking for over a year now does not go down well with my gut – I know this. Initially when I took it, I was running to the toilet for weeks (unlike other ADs) and it seems as though my sensitivities have worsened while on it. Whether it’s the drug or just the disease evolving, I don’t know.
Does she charge a reasonable price for this?
I’ll have a look online too. So what other reactions did you get to things? Headaches at all? Aching, stiff joints? Did they progress over time?
Thanks Kim. Zoology should probably have a look at this too.
edit: Kim – just checked out the site and it sets off my warning alarm bells but I’m going to chase this up given your success. Nothing to lose except a few bucks. Knowing my luck the enzymes will give me a headache! :roll:
Kelley – an interesting article on the “myth” of the brain chemical imbalance in terms of depression:
mental-health.families.com/blog/ … -imbalance
Researchers are speaking out about this “lie” that is spun to people in doctors’ consulting rooms around the world. Johnathan Leo of Lake Erie College of Osteopathic Medicine in Florida and Jeffrey Lacasse at Florida State University concur that advertising that claims that depression is caused by a chemical imbalance is misleading and should be banned.
Johnathan Leo argues, “low serotonin levels are no more the cause of depression than low aspirin levels are the cause of headaches.”
Kim - I live in the East Bay and have heard of Bioset… there used to be a center in Milpitas somewhere. Anyway, there are so many digestive enzymes, and I have taken them for two years. I find them to be invaluable. However, how do they figure out which ones to take?? I assume by the testing procedure?? And, I also assume this is all out-of-pocket expense not insurance billable? That is one of the problems (blessings) with functional medicine, environmental medicine, alternatives, etc. is that insurance companies don’t recognize much outside of acupuncture and some chiropractic (and also doesn’t allow them to control their practices as well…).