8 posts were split to a new topic: Some more thoughts on this being a possible inner ear thing
Had “pot brownie from repository” May 29th 2017, gave me vertigo for 6 hours, puked 2 times. Woke up still dizzy.
First was my GP (June 1st 2017), said it was double ear infection, gave me antibiotics, 11 days later or so, went back saying my ear still hurt, he wanted to give 10 more days of antibiotics.
2nd was ENT (June 23rd 2017) because I thought the diagnosis of ear infection and more antibiotics seemed odd. ENT agreed and said your’s are clear.
3rd was the neuro-oto-tologist late June 30th to late July 2017)… He said VM after I did his hearing test, tilt test and some goggles and laser on a wall. I decided to further investigate, not happy with the doctor or the diagnosis and no real help.
Had an MRI (not MRA contrast), brought back to 3rd doctor and he once again said VM. Then he also did a cat scan of my left ear for SSCD and said that looked okay too, once again VM.
I seeked out a different doctor.
4th doctor (late July 2017) Neuro-oto-logist at Yale. Moment he met me and saw all my readings from the previous exams from the 3rd doctor he said VM. Set me up for caloric test (July 31 2017). (I have the paperwork from it just haven’t uploaded it yet). Referred me to his neurologist.
5th doctor (mid August 2017) Neurologist read my charts and said stick with vitamin B2 since magnesium pill gave me vertigo. Have been seeing him since then. He said the marijuana for me was the catalyst. Showed him hearing test in Dec 2017 from 3rd doctor’s office and he confirmed it’s VM. He has been asking me every 3 months I visit if I’d like to try prescription meds, this last go around I was feeling great and noticed a lot of things were in the past and no longer bothering me. (however, a day after visiting him (Mar 6 2018) I had that HUGE issue with the antibiotic which essentially reset my ear calculations and has been messing with me since).
6th doctor (October 2017) Dr Rauch in Boston. Moment I met him and showed him the hearing test, MRI, left ear cat scan he said VM. Said it’s a chronic condition, can get better or could get worse. Confirmed it’s not Meniere’s disease.
Have you tried a med?
No. I fear the side effects and I was actually doing pretty well without a med… until the antibiotic decided to jumble things up again. My neurologist wanted to do either Effexor or Propranolol. I mentioned in my notes last November what he wanted to give them for I just cant recall. One is his choice for dizziness and another is for migraines.
For instance, the most I’d get was slight light headed when rain came through. Other than that, I barely saw anything else. As @BHMaloney and I discussed, he said it sounded like I was swiftly on my way to recovery… which seemed so, until the huge set back from the antibiotic attacking my ear.
I’ve been paying attention to this thread. Darling, you have a saga going. Take a med, maybe Effexor or Amitriptyline. They can be a bridge to get you back to functioning. The side effects are no worse than where you are now and they tend to abate over time. Give it a couple of weeks, see how you do. Then re-evaluate.
As much a med sounds helpful, I was just given word I’ll probably be starting work in about 2 weeks. I’d rather not med test under a stressful job where I’m interfacing with my office workers and clients on the other end. I was hoping they’d push out for another month. I’m getting most of my balance back, but still some glitches towards night time (imbalance, some dizziness ((stuff I felt last August/September), but each and every day it’s calibrating. My tolerance for lights is low as of right now, but every day it gets a bit better. I know the challenges I have ahead and I do have Theraspecs which I tested at IKEA (fluorescent hell) and they worked. When I did my interview I was under fluorescents there for a good hour and a half, 2 hours and I had no issues without even using the Theraspecs.
I just don’t want to risk a med. I’m not at that last hope so to speak since I saw how far I came with just my vitamin B2. I was ready and prime to work a month ago before the antibiotic caused collateral damage.
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I knew about the job. You could be med testing at a very low level now, before the job and find yourself in a much better place when the job starts. Amitriptyline is supposed to be the gentlest med out there for MAV and addresses a lot of the symptoms you specifically have. And this is coming from someone who is very sensitive to meds and prefers a natural route. I generally use meds as a bridge from some tough spot to a more tolerable place. I stay low on the dosages for easy withdrawal. It’s worth considering.
Hmm…So you understand the super sensitive risk as well and the very natural route. Did you have reactions to Magnesium pills as well, or no? And I know each and every person’s reaction to all meds is different.
I’d have to set up another appt with my Neurologist which he’s hard to get a hold of (a lot of times out of country), but I could ask him about Ami as opposed to his drugs of choice.
Try calling him to see if he’d consider calling an Rx in. They might.
Yes, I’m sensitive to absolutely everything, Mg included. There’s a reason I work from home…
I have yet to trial a med that didn’t make me initially worse. Ami has been the least disruptive so far, but we’re still looking at a few days or a week before things get settled - even at a low dose. Others here barely notice the stuff.
Sounds like me-- but I don’t get to work from home (wishful). Possibly a career change into computer programming if this job doesn’t work out for me.
What dosage of ami are you at?? Do you take it at night? What was your initial reaction to it?
10 mg at night, nauseous, dizzy zombie for 4 days. Every day after that is much better. Yesterday I worked in front of a computer for 10 hours. That hasn’t happened since December. A little tired and maybe a bit dizzy today, but juggling between this conversation and work just fine - on a screen. My sole complaint is that is knocks me out of ketosis overnight. I’m pretty sure I’m the only person here who even cares about that.
Hahaha I laughed at your last sentence. I do feel you’re the only one in ketosis here. Hmmm, does ami do weight gain? (I just lost a lot and don’t feel like having issues with that again. That was a nightmare. My brother thought I was going to have a heart with my 35 lbs I was before) and I have no issue with using computers at all, even for extensive periods of time. Granted I also turn the brightness down on my MacBook Pro to about 3 clicks. Can watch tv for hours and hours. Extensive sitting will make me a little imbalance for a short brief period of time.
I’ll definitely add, I hate not feeling in control so when I got this condition it threw me for a loop and when I get these glitches or add any little meds or even sensitive foods that get me, I’m very irritable and concerned.
Nortriptyline is a close relative of amitriptyline. It’s the one I’m on. I asked the doctor about weight gain (because I had read that about ami) and he shook his head and said no, that most of his patients just complain about dry mouth.
Nortriptyline comes in 10mg capsules, which is what I started on. I worked my way up to 30mg (3 capsules, all taken at the same time in the evening). I haven’t noticed an increase in my appetite.
You could try calling Rauch’s office, ask to speak to his nurse, and tell her that you are ready to try a drug and you want to know if you can try a small dose of nortriptyline. Shoot, tell her that you’re really wary because you’re sometimes sensitive to drugs, but you have a friend who started on 10mg of nortriptyline and hasn’t had any side effects. It can’t hurt to try and it may save you an office visit, since he’s mentioned drugs to you on your previous visits.
@Space_Cadet I agree with Anna it cannot hurt to try a drug. Again if you are sensitive then you can drop the med.
Not much of an update right now because I’m a bit tired since it’s late but I’ve slowly been making progress again, as I always say, each week you notice differences rather than each day. Time is key.
I did have 2 questions I wanted to ask everyone though. Has anyone tried pumpkin or blackstrap molasses or both? Looking to get into more recipes and wondering how people fare with them!
As one of my notes for my update though, store bought ricotta cheese (one organic and another regular whole milk) has given me quick cluster headaches after about 10 minutes. I want to look into making my own ricotta cheese.
Oh and white chocolate chips (ghirardelli) apparently hate me. I can’t recall if I noted that in my update previously.
Well, that’s interesting. Do you tolerate other dairy products? I wonder what it is about ricotta that gives you the problem.
I don’t think either of these would substitute for ricotta in a recipe, but I recently tried two other “fresh” cheeses. One is goat cheese, which I saw one day at Costco. It has more of a tart taste to it and is a little crumbly (sort of like Feta cheese), but I liked it. The other is “Queso Fresco,” which I also bought at Costco but I’ve seen in the local grocery store. It holds together better (can be sliced) and has a mild flavor.
I’m a bit lactose sensitive (it’s usually bad with cream) but I’m ok with drinking milk whenever, whole, skim, 1%, 2%, before this whole condition (entire family is) I usually use cream cheese a lot as a cheese now (funny enough it doesn’t bother me like American cheese), but still trying to lose weight so I’m reducing how much I use once again.
I was using American cheese rarely (still do if I get fast food) cause I noticed if I have a good amount it’ll bind my stomach up and make me feel crappy (not dizzy but just like a human garbage can).
I want to find a cheese I can spread / sprinkle but also won’t act up my cluster headaches so I can make pizza once again (I make my own tomato sauce as to avoid all the added crap from store bought stuff)
I’ve read goat cheese is a maybe and also mozzarella is a maybe to avoid migraine issues. Very hit or miss. Haven’t tried either cheese yet though.
I’d love to make stuffed shells so making my own ricotta and seeing if that’ll work would be nice.
What gets me is that the ricotta organic one looked very clean, 3 simple ingredients, but maybe it was their process or another additive which didn’t have to be labeled? I’m unsure. I can use white vinegar, but it was displayed as just “vinegar”, so you never really know, but I’m unsure.
I will say, with this whole condition, I’ve become a lot more of my own chef than previous to the condition where I’d always just buy take-out.
I used to love cheese so thank you for recommending those. I’ll have to look into those and report back if I get a cluster headache or if it was golden for me!
I think the goat cheese could work for stuffed shells.
I think there are different types of mozzarella. There is “fresh” mozzarella, which I think is OK for some migraineurs. But I don’t think that’s the type that you see in the store in the Kraft packages (either the bags of shredded mozzarella, or the blocks).
For pizza, you could probably use the Queso Fresco or Queso Blanco but instead of shredding it, slice it into really thin slices and spread those over the pizza. Use one of those cheese slicers that has the wire for cutting instead of using a knife. You can get much thinner slices with the wire cheese cutter.
In fact, the reason I saw the Queso Fresco at Costco was because a woman was giving out samples and the samples had been heated and sort of melted. So I think it would be a reasonable substitute for mozzarella on a pizza.
You could try a vegan cheese substitute. I can’t do soy or dairy so I avoid the whole thing, but if milk sugars are the issue, a vegan cheese might work.
The goat cheese - It would be a good addition to my palate.
Fresh Mozzarella-- I picked up a fresh ball from Trader Joe’s but haven’t taken the leap yet to try it. It has to say “fresh” from what I do recall. Thanks for that!
Hmmmm… What’s in the queso fresco for ingredients? And which brand? Good to know for that as well!
Ok! That sounds delicious!!! Are you sensitive to cheeses too or dairy at all?
My buddy told me about the one he tries and I didn’t like the ingredients in it, but I’ll continue looking!