Well, the new headache person I saw today wants me to start nori and eventually possibly topamax. She also wanted to stop my periods with a birth control pill, but I declined-anyone else had this kind of treatment? I guess I might feel better, but it just seems unnatural to me. She pointed out that it is unnatural for women to have as many periods as we do these days (in the old days we'd be pregnant a lot more).
Anyway, now I have my nori prescription and I guess I'll try it after I clear my body of the 5htp. Any thoughts on what to expect? It sounds like feeling drowsy is a common side effect...is this usually extreme? Should I be worried about this? Should I also stop taking my other supplements? She didn't believe that the b-2 and magnesium are useful, but I disagree. That really surprised me, actually.
She definitely thinks I have MAV...she didn't really completely explain what has been going on with me..said it could be all migraine or just a follow-up to the inner ear virus...either way, it's a genetic problem I need to treat with meds. She seemed to think I would be taking meds for a while, which worries me about any thoughts I had about pregnancy.
She also said I should definitely keep doing the vestibular vrts. I'm fine with that, but it is interesting to me that different docs say different things about this. I'm actually supposed to have a procedure tomorrow (Epley?)--I don't think the VRTs are making me worse...she feels that they help keep the vestibular system stable. I know other docs feel the opposite. Not sure what to make of it all. If I do have a VN component, then I guess the VRTs make sense for me, but it is confusing.
Anyway, I know many of you have taken the nori. Any advice or notes on what to expect would be greatly appreciated! I'm just starting at 10 mg, but I think she wanted me to work up to 30 mg rather quickly--is that typical? What is considered therapeutic for nori--somewhere around 50 mg?
I'll keep you posted if and when I take the plunge!
Hey Violet...well I have noticed some consistent improvement with nori. Started 10 mgs...and bumped up 10mgs every 6-7 weeks. I am in month 8 now, and on 50mgs. I have started having real periods of normal...but still up and down... Ihad a good day today, but tonight...I am off.
What I would expect, or what happened to me was I felt gross or more elevated the first few days or week when I started. Then it gets much better. Expect that...if you don't you could stop before it really helps. I do know other nori takers that bumped much more quickly then I did, every two weeks I think.
Also, I started getting the typical migraine pain after a few months. My doctor says this is typical...he said it is stripping back the symptoms. I have posted a bunch of Q&A from my doctor if you do a search with my name.
well, i think you should do just fine on it. i started at 10mg and went up every 2 weeks by 10mg. so it was really "fast" increase in comparison to charlotte. drowsiness, some heat flashes, elavated heart rate were my main side effects--but ONLY at the beginning. i hit 40mg and stayed for a bit, but was way to drowsy to function like i should. weird, i know. but other than that...no big deal. and i'm pretty med sensitive with most things.
that's weird she wanted you to start birth control, i would assume the opposite--although i think altering hormones either way would possibly cause some more migraine issues. i'm on birth control and have been for almost 10 years, and it hasn't stopped any "migraine", that's for sure. sometimes, they are known to cause them instead.
also, it's strange she didn't acknowledge the magnesium, my neurotologist told me to buy it and try it out cuz he thought it may help.
The "endpoint" for this type of drug is to get to a dose where you wake in the morning, might feel like you don't want to get out of bed, but once up and around are OK. And once out the door you should feel fine and not sedated or lethargic. You will likely feel weird for the first two weeks but as the others have said it goes. Another person I know from another board says that, for her, 40 mg is the sweet spot. Any more and it's not good for her. You may well be different.
I just visited with my Super Vestibular Therapist (she's like a superhero to me!)....she did some repositioning maneuvers (my eyes still move around crazily in certain positions.) She really seems to have a great handle on this stuff. She completely supports being on the supplements (she also recommended another--some extract from butterbur).
She also said that nori helps inner ear problems as well (I thought this was very interesting!)...she said the target dose for that is around 25 mg, while it is higher for migraine and depression. She also pointed out that the dose may well be lower for smaller folks. She said most of her patients have very few side effects from this med...at most dry mouth and/or some sedation at first.
We talked again about the migraine/inner ear connection, and she just reaffirmed that in us folks with migraine predisposition it is often a two-way street...the two conditions interact and provoke the other. She said what many of you have also been told...we just have to break the cycle and calm down the central nervous system, which is more sensitive in us migraineurs.
(She also mentioned that another reason periods are rough on women with inner ear problems has something to do with the lymph or fluid in our ears. I know it can also make it worse b/c of hormones & migraine issues.)
By the way, the headache doc mentioned that the overly sensitive migraine brain has a positive side as well; she connects it with creativity, sensitivity to others, instinctual "vibes," etc. Good to know there's a bright side to all of this!
I'll keep you guys posted on my med experience, as soon as I'm ready to take the plunge.
Welcome to the world of Nortriptalyne!!
I started on 25mg and went up 25 mg every 6-8 weeks until I was at the 75 mg. I had no side effects except that I am better able to sleep at night. The ease in which I took this med is highly unusual for me...I hate meds and actually fear them, as I am so med sensative. This has not been the case with the 3 meds that I am currently on. It could have been because I was in such bad shape that I was desperate to feel somewhat "normal" again, or they are just easy meds for my system.
I am glad you are on the road to feeling better. I know that Charlotte and I have talked in the past about that we felt like we were being proactive by taking our meds, to feeling better.
I think the theraputic dose is 75mg.
keep us posted!!
Thank you for your note! I just kept hoping I'd get better with time and the other stuff I was doing, and maybe it would happen one day, but hopefully this med will indeed give me the boost I need and want. Of course I'm afraid to start it, but it sounds like it should be fine. Thank you for sharing your experience with me! I hope I have a similar one. I'll keep you posted!
Thanks for posting more about what your therapist said. It always makes me feel that much better when we find a professional out there who is on the same page as we are. There aren't many around that's for sure. Just amazes me that it's literally taken me years to learn this stuff – to actually discover the true story behind this dizziness affliction. Can you imagine if we had no internet access? It could be the 1980s and we'd be walking around like this having no idea why it just went on and on. I can't imagine.
>>>she just reaffirmed that in us folks with migraine predisposition it is often a two-way street...the two conditions interact and provoke the other. She said what many of you have also been told...we just have to break the cycle and calm down the central nervous system, which is more sensitive in us migraineurs.
Very cool and inline with our thinking.
I'm actually having some rough days again, but not because of the condition per se, but because of the lexapro fallout. I know that the way I'm feeling is due to a serotonin defecit. Concentration is poor, my nights are agitated and I wake feeling very flat. I pick up as the day goes on but it's a real bore let me tell you.
I'm going to start concentrating on the supplements again at a slow pace, one at a time, so I can monitor any unforeseen curve balls that might arrive. Really glad to hear your therapist giving the thumbs up to the antimigraine herbs/vits etc. Most in the medical field seem to shrug this off even though there are RCTs in the literature showing efficacy. I started 5 htp yesterday (100 mg) and still on 3/4 SJW with very little gut disturbance which is great. I'm wondering if I should bump it up or just wait for the 5 htp to work (if it does anything at all).
When are you going to start the nori?
edit: Violet – I'm interested in knowing how/why your therapist thinks VRT is still useful given the migraine component. Apart from one paper, most will tell you (Dr Rauch too) that VRT only makes things far worse for migraineurs, which makes sense to some degree. On the other hand if there is some uncompensated mess to clean up I imagine that VRT must still work it's way in there – maybe at a slower rate – when migraine is present. Any thoughts?
It's very good to hear from you! I'm so sorry that you're going through a rough patch. Just repeat the mantra that it will pass! It never feels like it will, yet it always does. I've been there myself, including last week. I think the natural route is extremely valuable. I imagine that it at the very least can help reduce the need for meds, even if they are needed as well. Do you take a high quality fish oil? That has greatly reduced the headache-migraines of a close friend of mine. He is absolutely amazed that after 10+ years his migraines are under such great control with simple fish oil! Obviously the anti-inflammatory properties. I take it, but not as much as I probably could.
Anyway, that's a very interesting point and one that I've wondered about as well (re: the VRT for a migraineur). She sees my problem as both inner ear and migraine and feels that both need to be treated. This is probably b/c she sees my eyes jumping about, and she knows the otoliths (or whatever!?) are moving about and she knows that she can help maneuver them into the right spot. Without treating the migraine component, no doubt the otoliths problem would never resolve, or maybe it would take longer. I really trust her, and she is working closely with the woman prescribing me the nori. She said that our VRT/positioning treatments will be based on how I am feeling with the nori. Today, after a month of her customized VRTs, she could see that my eyes are better (and I feel less dizzy). I think the VRTs are treating something, but I also think that when things like my cycle come around, the chemical changes or fluid changes are too much to deal with and things get worse.
I know that other docs disagree about this, although I have read of supporters as well, in cases that involve some kind of vestibular damage or even to help one habituate to the moves that make one the dizziest. It's a very interesting question; I will ask her more directly about it next time I see her.
One other thing...over the course of my illness, I did find that VRT (like Cawthorne Cooksey) gradually helped me get better at moving my head about, etc. Of course it ramped up my symptoms, but that would pass.
In the end, maybe VRT is not needed at all and meds can fix the problem. I just don't know. I got a positioning maneuver done today, so I'll let you know if I feel any different over the next few days. It might be like those cases in which BPPV is caused by migraine. You have to treat the BPPV, but then also address the migraine. I seem to have a kind of BPPV, but not the exact kind I read the most about..it actually all confuses me a lot.
I'd love to get all these experts in a room and hear their thoughts on all of this. I so agree about the computer--how lost would we be...esp if we were house-bound--no library? Amazing.
PS Re: the nori...I was going to take a day or two and then try it..I'm procrastinating, but I do feel that I might as well try it out. Did you have a bad experience with this med? I seem to recall that you might have...I'm hoping I just get a little drowsy. The doc is starting me off on just 10 mg, which I believe is quite low. I also found out a family member took elavil years ago and was just fine, so that gives me courage. It sounds like a drug with a lot of possible serious side effects, but again I'm hoping the low dose will preclude all that....???
I was taking fish oils but have stopped basically because I ran out them and have been too lazy to get more of them. But I need to do something and fast. Today I hit a new low in this Lex withdrawal. I am quite astonished at how hard I'm being hit after only 9 days on the stuff. I just stopped cold turkey 8 days ago now and only now am I getting the full fallout. It's bizarre how long it all seems to hang around the system. It's such a crap feeling - even the smallest things bother me that would never usually bug me at all. Emotions are really wide open, like an open wound or something. It takes nothing to stir the pot.
I tried nori but it made me really anxious immediately. I'm not a good advertisement though because I was only just off Cipramil and my brain chemistry is probably so out of whack that anything I take causes trouble. I'm sure you'll be fine on it.
Not much in the mood for writing tonight so think I'll just go to bed and hope tomorrow is better than today was!
I am hoping today was a better day for you! It was a worse day for me, no doubt b/c of the repositioning procedure yesterday...we'll see if the fall-out lasts a long time or if it ends up being better.
You mentioned elsewhere some concerns about the 5htp...I'm wondering if starting at 100 mg was maybe too high? I took 50 to start and felt some hot flushing and some anxiety. Went back to 25 and it was fine...just helped me sleep/calmed me down/helped mood. Stayed on 25 for a long time & sometimes went up to 50 (when I felt bad) with no problems. I'm thinking maybe your body is just needing more time to adjust?
It is amazing how difficult it can be to get off some of these meds..hopefully it won't be too much longer before you are back at your baseline.
Thanks for asking about me. Today I'm worse again and really feeling quite worried at just how bad things are. I feel totally shell-shocked, as though I just survived a plane crash or something. To think on Sunday I felt fine! Dizziness is there too but mainly because of the anxiety. I was looking over my diary and can see I had two days like this in June which I survived after bumping up SJW to a whole tab which I did this morning. If things don't level off or show signs of improving tomorrow I'm going to be in a real bind and will have to seriously consider an SSRI again dammit.
I just cannot get over how this thing messed me up in terms of anxiety and this new predisposition to what feels like post-traumatic stress disorder. I barely knew what anxiety was before this arrived in 2003 let alone depression. This garbage has totally hosed some of my brain circuitry.
Just crazy that this is all going on and yet no one in my office has a clue. Makes you wonder who else is putting up with horrible symptoms but never lets on.
Sorry your'e having a time of it Scott. Just think though,...how you feel on your really crappy days, I probably feel every day lol, even with meds! I'd kill to have some normal days. Every day is always some degree of feeling sick, nauseous, headache, the world is moving, shimmering, vibrating, glowing, shaking, shifting, and it's driving me UP THE WALL!!! It never stops, even for a second!! Gotta sleep this anxiety off tonight. I need to get on a more therapeutic program ASAP. But at the same time, I fear all these meds and all the combinations. Sometimes I fear the cure is worse than the disease. I mentioned in another post, my friend is in the hospital with a blood clot in his leg because of,...DA DA DA,....TOPAMAX!!!! It's just unreal! I thought these meds were supposed to be safe!
Thank you, Charlotte--I am very thankful for your support ! It's so hard to know what to expect...there is such a long list of side effects with this med! I have to remind myself this is a super low dose and it has been around forever, etc., etc. I feel kind of weird, but I always feel weird with this crazy illness. I am praying that this is what I need...I'll keep you posted...
Man, if you feel like I do now every day then you deserve a few hundred olympic gold medals. Last night the bottom fell out on me completely – I mean total meltdown again. I know I'm in the $%#$ when the visual vertigo starts. So all day today looking at my Mac has been a disaster. Total disorientation and freaked out, eyes all over the shop. I tell you, when these migraine episodes hit me, it's like a freight train ploughs right through me. Do you ever wake in the morning in a massive episode and feel like you're about to die? Had that this morning... has to be the most disgusting feeling I've ever known. And get this: another sore throat is lurking. I'm facing the possibility of 27 hours in jets with a full-on MAV attack PLUS head cold this coming Saturday. Let the good times roll eh? All I can say is thank God there's such a thing as valium. I think I should buy shares in the company.
Well, I survived the night! I feel kind of sick and the symptoms are definitely ramped up---dizzier and a weird sedated, all-around sick feeling. I felt a little anxious today as well; dry mouth thing tonight. Does this sound normal for this med? I'm really hoping that I feel back to my baseline soon--or even better!
I'm very sorry to hear that your symptoms came on so strong! I can't imagine having a complete escalation of symptoms similar in any way to what kicked off this illness for me. I hope it passes quickly...is this part of a pattern you are used to with symptoms flaring and then calming down? Mine started off super extreme and then they have quieted very gradually since then...fluctuates a bit day to day and throughout the month but with no noticeable "attacks."
I've been feeling funky as well with my new med and the adjustment procedure last week! Can't wait to stabilize a bit...