I've been taking the nori for four days now and I am indeed feeling worse. Some of you warned me of this, but I just want to check in and see if my side effects sound familiar to anyone...if so, I'm hoping it goes away soon.
Basically, I feel quite a bit dizzier and I'm also much more depressed (I know this sounds counter-intuitive!). My appetite is gone, which is weird also, but I can deal with that. Just wondering if anyone else had this and then--I'm hoping--it went away and got better.
I'm hoping to continue the meds for at least a few weeks, but I imagine I might need to stop if I get severely depressed. I'll also probably call the doc tomorrow.
The same thing happened to me actually on that stuff but I didn't give it nearly enough time to tough it out. I was just not up for more anxiety and depression AND lethargy. A trifecta. Wasn't my scene. I'm not trying to put you off though because I hear so many good things about it!
On the other hand I wonder how similar you and I are with this thing? You describe anxiety and depression exactly as I do. If we are, then you'll almost certainly kill this thing with an SSRI. I've pretty much decided I'm not going to *****-foot around anymore. The next stop for me is definitely Effexor low dose. No way I'll take it past 37.5 mg though. I might even see how it goes on half of that. It's just too hard to not take what Hain says seriously – the whole 80% success thing. And I was sent this today: a letter that gets sent out to migraineurs if you happen to see Dr John Carey.
Migraine-associated vertigo or “vestibular migraine” is one of the most common yet least recognised causes of vertigo. Migraine occurs at some point in time in 15-20% of adults in this country, and 25% of migraine sufferers report attacks of vertigo. The symptoms may be described as vertigo (spinning, rocking, swaying, etc.) or simply dysequilibrium. The symptoms may be quite variable in duration, lasting minutes to days in episodic cases, or may present as constant dysequilibrium lasting for months. Intolerance to movement of the head or the visual world is a frequent finding. Typical migraine headaches - with nausea, photophobia, phonophobia, visual or other auras – occur during the vertigo spells in only about half of cases. Often the patient has a prior history of migraine headaches, but feels that they have resolved. Milder head or neck pain or pressure may replace the pounding headaches and accompany the dizzy symptoms. A family history of migraines may be helpful in the diagnosis, as may a history of unexplained falling spells and motion sensitivity as a child.
For treatment we first encourage a strict migraine control diet, eliminating common migraine culprits including chocolate, wines, caffeine, certain cheeses, monosodium glutamate (MSG) as well as less frequently recognized problem foods containing yeast (yoghurt, sourdough, freshly made bread), nuts, and nut products. We also encourage a regular sleep schedule and aerobic exercise program.
When patients follow these guidelines and still have migraine-associated symptoms, we emphasize prophylactic medications ... Effective prophylactic medications are chosen based on the patient’s other medical problems and tolerance of side effects. Some suggested regimens follow:
Antidepressants: Nortriptyline starting at LOW doses (10 mg/d) and slowly increasing to 50-100 mg at night. Higher doses (100-200 mg) may occasionally be needed. Levels can help guide therapy. Dry mouth and sedation are the most common side effects. SSRI agents have less proven benefit in migraine control. We have found mixed agents helpful, such as Effexor XR starting at 37.5 mg/d and increasing by that amount weekly up to 225 mg. Note: Hain says to spill out the pills in the 37.5 mg and take a third.
And on it goes about calcium channel blockers and anti-convulsants etc. But this bit is good – especially the depression/anxiety stuff:
All patients are cautioned that migraine symptoms often do not respond quickly to these interventions. Great patience is required of the patient and physician as 6–8 weeks of diet changes or the full dose of any new medication may be needed before benefits are seen.
Anxiety, depression, and even panic attacks are frequent accompanying diagnoses in these patients. These diagnoses should be recognised and discussed. The choice of a prophylactic medication may also be influenced by these other conditions.
Thank you so much for your reply! It really upsets me that I had been feeling better and now I feel so much worse again on this med. Also, I really don't want to have to go up to such a high dose for it to be effective. It does seem like it has helped so many people, but it is also true that it can have serious side effects at the higher doses and that bothers me. I thought at most I would take 30 to 50 mg...not sure what I would feel like on that, let alone 100-200! That's very high and would certainly require blood tests, I would imagine. It's interesting, b/c the therapeutic dose for depression is also quite high, which again puts you at risk for the bad side effects and also means my blues probably won't get a lift from this unless I up the dose a lot.
Effexor works on the same neurotransmitters, doesn't it? I think the nori just hits the norepinephrine a lot harder, and it affects other things as well. Let me know if you do decide to try that; amazing that it has been found to be so effective. I think I would like to try prozac or zoloft next--it would be such a relief if that did the trick, as the ssri did for you.
I just don't know whether to give this up yet or not. I'm not looking forward to any side effect of getting off of it, so I might keep it up for at least a bit longer. Will call the doc today.
Sorry about your issues with the med. Keep in mind that also the migraine symptoms will also wax and wane on there own!! You might be under more stress than you realize with the new med. So, the issue COULD be the med or it could just be migraine symptoms!! Does that make sense? I would say the next few days, try to take more breaks throught the day and allow yourself to rest...hard, I know, but you maybe are just over your threshold and so you are having worsening symptoms.
Also, you may have no side effects from stopping the med. Some do and some don't. I know someone who was on the Effexor for 4 years at a much higher dose and had no problems weaning herself off!! So be cautious with all that is written on internet as well as the side effect list you get with your meds. Remember that the pill company has to cover thmesleves, so they write down every and all symptoms that the testers felt....so it could have been the persons own anxiety causing their reactions and tno the pill, but it has to be added on the list to cover themselves!!!!
Hi, you mentioned 2 things I wanted to ask about. You mentioned 80% success? Is that meaning treatment for MAV has an 80% success rate if treated with the proper meds for that patient? Also you talked about effexor...about Dr. Hain suggesting 1/3 of the 37.5 capsule. That sounds more reasonable to me as anything seems to make this worse . My Dr. just prescribed that for me and I am very nervous about starting at 37.5, due to previous reactions to meds. I wondered about how to cut it back, because its in capsule form.
Thank you for your post! I know you've done really well with this med, so I'm hoping I'll get over this hump and start seeing some benefits. I think I am having some reaction to the med, but that's not to say it won't pass.
Anyway, I'm not sure whether or not this med is right for me, but I'm hoping to give it a fair shot. I probably should take it a little easier...maybe things will change in a few days?
I really understand where you're at with this new med and wondering if it's worth sticking with it. And when things feels worse on it, it's really hard to stay on it. The last thing we want is any increase in symptoms – even minor. I can't see that you would ever have to go that high on the nori. Most people I hear about using it get results around the 40 mg mark. Also keep in mind that you should not feel sedated once you're out the door and getting on with the day. That's the clinical endpoint Adleman discusses when he gives this to people for migraine. If they become too sedated, no matter what the dose is, he adds something else or moves on.
cknmbbl – here's a summary on using Effexor according to Hain:
Venlafaxine (Effexor XR). This antidepressant medication, of the SNRI group, is very effective and has relatively few side effects. We particularly favour this drug for the visual dependence symptom commonly seen in migraine. The usual dose is small – varying between 12.5 mg and 75 mg/day. Venlafaxine increases blood pressure, and is neutral in regards to weight. We have encountered withdrawal problems in persons who stop Effexor in larger doses than 37.5 mg, but none with the low dose of 37.5 generally used for migraine. We have also occasionally encountered suicidal thinking in persons on venlafaxine in spite of good headache control and without previous depression – we stop the drug or reduce the dose in this situation. We usually start persons with 1/3 of the time release (37.5) and titrate upward every week.
I can't find it right now but I know he finds that in about 80% of his patients, Effexor does the trick. If not he uses Topamax after that.
Thank you for the info, Scott! Those are great results with the Effexor, esp as the dose is so low. It sounds like it is worth a try. I hope things steady a bit for you this week--I'm very impressed that you (and others on this board) manage to keep working, etc., through all of this...it is inspiring and good to realize that we are still functional in many ways even when we feel really off.
Today I finally talked to my dad about migraine (we talk rarely). Turns out he has gotten visual migraine stuff (the jagged lines & loss of vision) since I was little--but he doesn't get the headaches so often! Apparently, several people on his side of the family deal with this problem. He even told me he gets dizzy from time to time...nothing incapacitating, but there it is nonetheless. It's hard to know with my dad sometimes what's actually happening, but it's clear there is a migraine connection. Weird stuff!
Wow – another great clue for you (but not a happy one) that migraine runs in your family. That is yet another strong diagnostic piece of information. At least you know exactly what you're dealing with as lousy as it is.
I have been eating valium tabs like they're Lifesavers at the moment (no pun intended). I'm really not liking this because I know how incredibly addictive benzos are. I'm just going with it until I get through the flight etc and then I'll be at my Mom's place and can chillout and detox LOL. What a life!
I was slightly incorrect on the Hain thing above. He follows this drug trial on his patients:
Starts patients with topamax --> and proceeds on to try effexor --> verapamil --> propranolol and then --> ami or nortriptyline. It is very unusual that headache control is not attained. When one "group" doesn't work, they combine two or 3 groups simultaneously (anticonvulsant, blood-pressure agent, antidepressant).
I can't believe you have a huge flight ahead of you, but I am very glad you'll have your Lifesavers along! I should probably make more use out of my Klonopin, which I just tote around with me like a security blanket and have never tried--it might make me more functional!
Do you think Hain does the nori last b/c of the possible cardiac side effects? I'm imagining so--also, maybe the other meds are quicker and/or require lower doses? It's interesting that some other docs continue to use the nori first off, but then others seem so anti that approach. I hope it is OK to do it this way. My plan is not to be on it long anyway, but of course that depends on quite a lot!!
My vestibular therapist today seemed surprised by my reaction to the meds--she seems to think maybe it's because I stopped my 5htp...possibly?? But I also think messing about with one's neurotransmitters is bound to feel a little funky. I wonder if I can take 5htp with the nori...hmmmm.
I found the power point presentation that was sent to me from a person I know on the other MAV forum – Hain just gives her his slides. So this is what he had to say about the drugs we've been chatting about:
Very useful in managing the sensory amplifications seen in migraine.
Cheap and very effective (Bulut, Berilgen et al. 2004)
Start with 12.5 mg, increase slowly to maximum of 75 mg
Side effects are minor, high doses have withdrawal syndrome
Antidepressants – less used amitriptyline/nortriptyline
Central antihistamine, antihistamine, norepinephrine, serotonin
Accumulate in body
Weight gain – 25 lbs – not unusual
So Hain obviously doesn't like the tricyclics much – calling them "messy" agents. Still, others seem to swear by them so it's worth you giving it a good couple of weeks I guess to decide if it's just not going to cut it.
I'm feeling MUCH better today. I'm on top of the deadline so stress levels have dropped to nil, and I think the higher dose of SJW is really supporting me and stopping a massive crash. I've still got a ton of residual dizziness hanging around though. It's at its worst when I have been sitting for a long while, suddenly get up and walk around, and then sit again. Once sitting the vertigo can go off for about 30 minutes. What a bore.
Thank you for the info, Scott! I'm very glad to hear that you are feeling better and that your work is going well.
I'm feeling OK, just weirder feeling as well as a bit dizzier. I'm going to keep this up for a few weeks to see what happens, as I don't want to have to wonder "what if..." later. It's funny b/c I do feel somehow both sedated and more anxious--must be the different actions the nori has.
The neuroto I saw here (the mean one) also didn't use nori, also calling it messy--probably learned from Hain. He wanted me to use Paxil.
Well, we'll see! I'll keep you posted on any big breakthroughs...
I am considering going up on my Effexor. I have permission from my doc to go up to 75mg. I am currently on 37.5 (or whatever it is!?!?!?). Do you think I should take some out of the 75mg cpasule? As usual, I am nervous about side effects going to the next level....I shouldn't be because I have had no side effects from any of my meds. I would love to hear your thoughts.
I find this really interesting. I went to the neuro on Monday. He gave me effexor. I am suppost to take the 37.5mg for 1 week and then move up to the 75mg. After reading about Dr Hains recommendations, I am not comfortable starting at 37.5. Is that where you started? Being in capsule form it would make it harder to get an exact amount out. If that matters. I had a horrible reaction to Lexapro, I was on the lowest dose and I cut it in 1/2, on day 5 I thought I was going to jump off a bridge. It had never been an issue before, the next day I was fine. If I were you and felt I needed to increase, I would probably do it slowly, but I would think since you haven't had any side effects, it will probably go well. I'm not a dr. just a person who wants to take as little of meds as possible.