@flutters That’s good.
I just feel like there has to be a better medication choice for me. My anxiety of symptoms is mainly about nausea and getting dizzier. Why can’t we have a medication that doesn’t have either of those as side effects?!
2 years ago I tried Amitriptyline 3 times but only lasted 2 days at a time as it made me dizzier, on 2.5 mg. I thought maybe it was nerves and I could try it again but as it looms closer (trying it maybe tomorrow or Saturday night) I am getting nervous about it and have no confidence that I can handle being dizzier.
There has to be a better solution!!!
I’m so terrified of trying the Amitriptyline again tonight. I know I need to do something as I’m housebound, but I am paralyzed in fear. I was doubled over crying for 15 minutes this morning. I’m even more scared of SSRIs and SNRIs, though. All of the medications scare me, and I thought Amitriptyline would be one of the “easiest” to start but now I’m not sure. I don’t know to make myself do this. I have zero confidence in myself to be able to handle feeling worse. I always get this way right before I plan to try a medicine. I get scared, sad, angry, mad, and then find any excuse (I can turn any reason into an excuse) not to try the medicine and I put it off yet another weekend. This cycle is also tearing my apart with guilt and stress. I always feel frantic, like I need help and need to reach out to my doctors, but there’s nothing new they can tell me. Even though my husband will be home the first two days I still feel alone, especially suffering overnight.
Does anyone have any coping suggestions? It would be much appreciated. Thank you!
I used to be the same way. Still kinda am. But amitriptyline was the first medicine I tried and it helped me. I’ve also taken a medicine that gave me side affects I did not like. What I’ve learned so far is that you just have to try. Because you will never know if you don’t. Plus, hopefully you will e starting with a small dose. Lastly, have you seen a therapist? It might be beneficial to talk about it and to maybe even practice cognitive behavioral therapy.
You need to talk to a therapist - probably over the phone. The anxiety and panic disorder issues are paralyzing you. Try to find someone to help you work through the mental/emotional fears first.
@Camille_Chaf and @flutters Thank you both for your suggestions. I have been to many therapists over the years and haven’t found one to really help my specific medication anxiety. Some have gone over general anxiety which doesn’t seem to help my specific issue since I don’t have general anxiety. Some have said to just “do things I enjoy” to “distract” myself. Right now most days I am stuck on the sofa and can get up in little spurts and some days can barely move my head. My “activities” are basically limited to watching tv or brief computer usage. No therapist has really approached CBT therapy in the way I know it is supposed to be. One therapist was close but wanted me to read a workbook every week and I’ve been unable to read print books for years thanks to the dizziness. I’d maybe get through 3-6 pages between sessions, and he never covered the book in our sessions so there was zero progress made. The last therapist I tried was in October 2017, and she seemed promising and in our consult said she’d be able to help me. Late on in sessions, after 6 of them, she said she was only going to be able to help me by exposure therapy, and she wanted to sit me in a chair and spin me around to bring on the dizziness. I was already dizzy in her office & was struggling to sit upright, I certainly didn’t need to be worse! And since February I have become completely apartment bound and can’t even get out to any doctors appointments, or walks outside, so that takes away the possibility to see another therapist. So at this point I have to try a medicine in hopes of getting better to get out again.
Unless, does anyone know of therapists who do appointments solely over the internet like a video chat? I doubt they’d do that at first, they all probably like to meet patients and then there’s billing issues.
@Camille_Chaf I will be starting with a super low dose, some people on this forum would laugh at how low it is. But seeing as where I had problems 2 years ago on 2.5 mg, I need to start low. I’m glad to hear the Amitriptyline helped you. Did it make you feel worse at first?
Thank you both!
We won’t laugh at the dose. @manatee posted an article today or yesterday that talked about ‘sprinkling’ doses because MAV folks are so very medication sensitive. Listen to your body. Maybe a tiny dose at first is exactly what you need.
@flutters Thank you. I hope so. I have heard of some of the meds being sprinkled, even over food.
Hi Jess. Have you tried any benzos? I saw a video one time and the guy was scared to take cymbalta so he taken klonopin. After couple of days, he had enough courage to take cymbalta and he got 90% better.
I know the guy you are talking about @Young_Lee. He is on YouTube. He got to 100% very quickly on cymbalta.
Yea. Thx to him i found this site when he mentioned success stories with vestibular migraine.
Jess, I am sorry to hear that you are struggling right now. Like you said yourself, you have to start trying medication. When I first started Amitriptyline, it was great! I slept like a baby. The only side affects for me were dry mouth and I think a little bit increased appetite but I’m not sure. It seemed to work pretty quickly for me.
Also, I may have asked this before but what have you done to get a diagnosis?
Lastly, you could look into functional medicine. That is what I want to do to see what I can do.
@Camille_Chaf Thank you. I struggle each time before I set a date to start a medication, and then I end up freaking out so much that I tire my body out and lose all confidence that I can handle it. Unfortunately when I tried Amitriptyline before it made me so much dizzier that I didn’t think I could be by myself when my husband went back to work after the weekend so I kept stopping it. And that was at 2.5 mg. I thought 2 years later it may be different but the fear keeps winning.
It’s vestibular migraine, I got the diagnosis within the first year by a neurologist. It was confirmed 4 and a half years later at the Johns Hopkins Vestibular Clinic (I think it’s called something different now). And my current neurologist, a board certified headache specialist, also agrees.
I would love increased appetite as long as it didn’t come with nausea or anything. And when I was on the lower doses before they didn’t seem to be high enough to make me tired. I could really use the help with sleep too. Also in the previous times there was the last trial where I had nausea the entire time the 2nd day. That was another reason I stopped. The dry mouth was HORRENDOUS for me too but I can handle that.
And as far as functional medicine goes, my mom keeps wanting me to see a naturopath since I’m afraid of medicines, but herbs and supplements have side effects too/bad reactions. And I also currently can’t get out. But overall I’ve heard on this forum that it’s basically a waste of money except for some of the supplements like magnesium, Vitamin B2, CoQ10, that some people have had success with. Oh, and my current neurologist thinks Magnesium would be good to add but overall I will need something more than magnesium to function, like a medicine. Sigh.
@Jess09, are you taking Magnesium now? That would be an easy thing to try. I’ll give you the brands that I am taking and tell you what I’ve observed from taking them.
I actually started taking Magnesium way before I found out about it possibly helping with MAV. I have osteoporosis and I take it because it helps to build bones.
So I originally took the Magnesium Oxide variety, which is cheap and can be found at Walmart:
Magnesium Oxide is supposedly not absorbed by the body as well as some other varieties. But I did notice on Dr. Hain’s website that he specifically mentions Magnesium Oxide when he talks about Magnesium possibly helping vertigo.
The only problem I found with Magnesium Oxide is that it caused loose stools. If I only took one tablet (250mg) per day that wasn’t so bad, but then I tried the 400mg capsules (same brand) and that made the stools much worse.
So I did some reading, especially on one of the osteoporosis forums. A lot of people said that they had better luck with Magnesium Glycinate. So I found some of that and started buying it. I buy the KAL brand, which says 400mg on the front but that’s for two tablets. So the tablets are 200mg each:
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The Magnesium Glycinate didn’t cause loose stools at all for me. So I was taking two of those, one in the morning and one with dinner, each day, and all was well.
Then I started taking Nortriptyline, which can cause constipation. And seemed to do so in my case. SO, then I decided to take some of each. So now I take one of the Magnesium Oxide tablets (250mg) in the morning, and one of the Magnesium Glycinate tablets (200mg) at dinner. That’s a total of 450mg of magnesium per day. That amount of Magnesium Oxide seems to balance out the effect of the Nortriptyline, and all is well.
So maybe you could start by giving the Magnesium a try. You can decide between the two varieties based on what I explained above, and just start with one tablet a day to see how you do.
@Manatee Thank you so much for your suggestions. It’s interesting, I’ve come across similar things about the Magnesium Oxide. I had my psychiatrist (who was/still is handling my MAV meds) tell me not to take Magnesium Oxide because it is so poorly absorbed. Yet my newest neurologist said she tells her patients to take Magnesium Oxide. And I also read an article on-line somewhere that Oxide was good for vertigo. But by that time I had already bought Magnesium Glycinate, based on reviews on this forum and from on-line research I did. Years ago, maybe 2013 ish, I did try Magnesium Oxide but wasn’t told it was for migraines, I was going to a doctor who thought I had some type of mold issue, and I don’t remember it causing loose stools for me but I don’t remember at all how much I was on and why I stopped taking it (I’m guessing I didn’t notice anything positive)
I tried Magnesium Glycinate, just 1 100 mg capsule to start out, back in December, with dinner. I have the Solaray brand. About 2.5 hours later I had horrible stomach pain and cramping, and increased gas. All the next day was the same, and for the next few days after that the same symptoms came back after each meal. My psychiatrist thought I could get used to it but I’d have to increase A LOT slower than I thought, and it seemed like it was going to maybe mess with my stomach almost as much as a medicine without the stronger effects a medicine may have. So at the time I wanted to just go for a medicine, but then the fear kept creeping back in. Had I stuck with it I could have maybe been on it by now, but hindsight is 20/20. I still have the bottle and would like to get on it at some point, but I was hoping to get on a dose of one of the preventatives and get to a stable dose and then try to add magnesium again.
My neurologist actually suggested the magnesium first too as a way to boost my confidence, but unfortunately it didn’t work out like that. The effects were tolerable but not pleasant, although the added abdominal pain did make it harder to fall asleep the first night.
Did you notice any positive effects on the dizziness or headaches from the magnesium alone before starting the Nortriptyline?
OK. So Magnesium Glycinate didn’t work for you, but it sounds like you were able to take the Magnesium Oxide in the past. I do remember now from the osteoporosis forums that people seem to react differently to the different types of magnesium.
So go buy a bottle of Magnesium Oxide, the Nature Made brand, 250mg, from Walmart or CVS or Walgreens. If you can take it, great; if it turns out you can’t, you’re only out a few dollars.
I haven’t noticed positive effects from either the magnesium or the Nortriptyline. But, it’s starting to look like I probably don’t have VM or MAV. I’m seeing a neurologist soon and I hope to know more after that.
I am sorry that you are struggling so much. I really do think you just need to try something.
I hope functional medicine is not a waste of money. I’m hoping to do that soon because I want to get to the root of the problem if I can, rather than cover up the symptoms. Also, definitly try magnesium. A lot of people are deficient in magnesium so it’s worth a shot.
@Manatee I was taking the Magnesium Oxide before my stomach became sensitive to food and meds AND before I was medication sensitive in general. Back then I tried MAV meds the night before work in the middle of a work week without a second thought. It’s possible it would be worse on my system now, but it’s something I’d like to look into again once I can get on a medication that can help me more.
I hope you can get a clear diagnosis soon, good luck!
@Camille_Chaf Thank you for your words. My rational mind agrees with you, I KNOW I need to try something, I just keep having fear win each week. But I’m feeling fairly committed to Amitriptyline this weekend, fingers crossed!
Keep us posted if you try the functional medicine route.
Ahh, OK, I didn’t realize that you had developed a sensitivity to food and meds since then. At least if you ever do decide to try it, it’s cheap. You won’t be out more than a few dollars if you buy it. And if you buy tablets, you could use a pill splitter to cut them in half so that you could try a smaller dose.
@Manatee Yeah no problem, I have so many details and aspects to my condition that I have never gotten to explain on this site. Just way too much has happened, so many doctors, tests, symptoms that have morphed over the 7 years of having this condition. And I’d like to be in more conversations but computer screens and typing are 2 of my biggest triggers. Cheap options are good.