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#250

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.


#251

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.


#252

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.


#253

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?


#254

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.


#255

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.


#256

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.


#257

@Space_Cadet I agree with Anna it cannot hurt to try a drug. Again if you are sensitive then you can drop the med.


#258

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.


#259

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.


#260

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!


#261

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.


#262

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.


#263

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?

@flutters
My buddy told me about the one he tries and I didn’t like the ingredients in it, but I’ll continue looking!


#264

Yes, the “fresh” from Trader Joe’s should be OK (as far as qualifying as fresh).

I looked at the package for the Queso Blanco and unfortunately the part with the brand name has been cut off, but here’s what I can tell you:

Ingredients: Cultured pasteurized milk, salt, enzymes.

Distributed by: Wisconsin Cheese Group, Monroe, WI 53566


#265

So, I did a bit of googling and also trying to look at costco’s website via google lol…
Is it a blue label and does Caribe sound correct?


#266

I think so:


#267

Yup, that’s the one. Thanks for confirming. I’ll have to check it out relatively soon.
Incoming rain so I’m starting to get a headache-- may take a nap.


#268

Still slowly recovering… Had a mishap the other night (4/26) with too much garlic and some raw garlic included to that :yum: around 7 pm and my body didn’t like it nor my VM condition. Went for an hour and a half drive and was still messed up after… Got home at 830 pm and ALMOST had full spin vertigo in my bathroom after I flushed the toilet more so… The noise of the water draining made things sooo disoriented. I turned off my bathroom light, read this site in bed + news and fell asleep… The morning after I woke up still slightly dizzy which made me scared cause it was sinking ground (marshmallow ground) and looking around felt very delayed like a blur and made me very nauseous but got better slowly during the day. I also noticed that running water made me dizzy in the morning too as if my sound sensitivity was very increased. I just sat on my couch for a bit and drank my bottles of water to filter my system. Still had a bit offness last night… Today (4/28) I was still slightly off. Being in the bathroom still makes me a bit off. Hoping tomorrow to be better. I went traveling to a couple different states though so the elevation changes were messing with BOTH ears for inner ear fullness (since 2 weeks after the antibiotic fallout another fallout randomly happened and made my right ear prone to inner ear fullness and tinnitus now)… Right ear is much faster to decrease back down and the left ear has been sticking, so I noticed the longer it sticks and stays full the more I get off from it… Doing much better than beginning of March but still having slight offness and the migraines/head tension during rain storms. Didn’t feel a bad migraine through yesterday’s rainstorm though so that was a plus… Slow progress but progress. Time time time. Patience patience patience.
I’ve upped back to 5k Vitamin D3 each day again, since I stopped after the fallout from the antibiotic in early March. I also tried the Theraspecs again this week and late in the week the week before. They work for me even with my not so great light tolerance that still progresses each day. Also this week before the garlic fallout I was able to be around my vent hood for my stove without ear plugs.
Also I can have molasses. Still have yet to try “fresh” mozzarella, pumpkin by Libby’s, peas, and the queso that @Manatee recommended.

With that said, I have a question about baking.
Is anyone able to use yeast? I’m interested in making crescent rolls currently and maybe other breads/whatever other recipes call for any type of yeast. I want to know if anyone is able to use yeast.

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#269

It’s been almost a month, since I last updated.
I’ve been back at work since May 9th. I like the job and the people-- my symptoms still effect me sometimes due to the weather/barometer pressure.
I am however reaching out to ask if people have been able to take ANY antibiotics because I seem to have come down with something. Sore throat, white dots, feel fatigued, slight cough every once in awhile but it’s usually 1 cough. Today was the 1st day, half way through the white dots went away after gargling salt a couple times, but 2 white dots came back this evening. I’m hoping I can kick this thing without antibiotics in a couple days, but I wanted to hear if ANYONE can take ANY antibiotics (as a last resort for me just in case which I honestly hope I don’t have to-- praying), because my last bout with the very powerful antibiotic set me back big time and caused issues in my right ear now, which was my good ear.
On a side note, I didn’t go get my throat swabbed today to see whatever this is happens to be bacterial or viral. I’m hoping it’s viral and just allergy related.
Yes, I’m nervous.