Tuesday, February 9, 2021

The information in this post is my own experience and should not be taken as medical advice. I am not a doctor or healthcare professional.



After a 3 month break for various reasons, I'm back to chelating. This morning I started round 107.
Finally, after 3 years of chelating, I'm almost back to the 12.5 mg ALA, which is the dose I started at.
(Had to drop my dose to 5mg, then to 3mg during my 22 month long dump.)


My progress has been slow, but thinking back over how I was at the height of the dump, I'm a million times better. Even remembering how my brain was last year, I've made good progress.

Last year, my longtime friend since elementary school (and maid of honor at my wedding) asked me to design kitchens for her remotely. (she lives in another state). I was a little scared at the time because I couldn't hold a string of numbers in my head...even a single number. I would have to immediately write that number down and check everything 3 times - even the simplest of additions. Most of the time I couldn't work on a design more than 30 minutes without getting brain fog. Following a conversation was difficult and once my brain "flew out the window", I couldn't understand anything.
I let her know that my bad days were unpredictable and there could be days when I had to stay in bed and couldn't do anything.

I am happy to say that I am now able to keep a string of numbers in my head and I'm able to work longer without getting tired. Designing kitchens is like doing a puzzle and working with numbers...you have a finite wall measurement and you have to get all the variables to fit (sink, appliances, trash cabinet, drawers, etc.).
     I use Floorplanner for a concept design before I draw the final designs. It's not exact, but and doesn't have all the selections I need, but it suffices for a concept.

Now, I have a bad thing and a couple of good things to share.

Just a warning if you have anxiety or PTSD

Last time I posted I had didn't share about an event I had because it was too soon after and would relive it every time I talked about it.
I don't go out much, so I don't wear a mask and only wear one if I absolutely have to because it makes me disoriented. In other words, I my brain flies out the window. Not a good thing when going out by yourself. When I've worn one, it's only been for a short time and/or I've had someone with me.
At the end of December I had to go to the eye doctor and get a new prescription and of course, wearing a mask is required. I knew I had a problem wearing a mask, so I bought a knit one that hung on the ears, but was long like a scarf. I was thinking that since it wasn't tight against my chin it would be less constrictive and be ok. It wasn't.
I'm getting anxious as I tell you this part...
I waited until the last minute to put on my face covering to minimize the wearing time. Once inside I had fill out forms while waiting to be called - maybe about 10 minutes. I couldn't finish the forms.
The assistant or nurse, not sure which, took me in, took my blood pressure (which was really high), taped the mask to my face under my eyes (bad idea) and did some tests on my eyes. The mask was already distracting me and I mentioned I might have missed some... she said I did. Then, I had the Optomap test, which is a series of pictures taken with super bright lights. Bright lights, especially flashing, have been a problem for me. After that, I was put in a dimly lit room to wait for the doctor.
I could feel anxiety coming up and then I couldn't hold it back anymore.
I started hyperventilating and crying uncontrollably and when I breathed in, the cloth covered my mouth and I thought I was suffocating and was (literally) going to die. I know...not logical, but neither is an panic attack.
The doctor came in at the worst of it and I said I was having a panic attack.
She immediately left the room and sent the nurse back in. --__--



Needless to say the lense prescription wasn't good because my eyes were blurry from crying. I had to come back again, get a new test and have them make new lenses .
When I made the new appointment, I let the person know what had happened.
When I went back, she did the preliminary tests outside and I didn't have to wear a face covering. My husband went in with me when I was called in and the doctor was ready and I asked them not to tape the mask. I was also wearing a different mask that sticks out away from your face.
When I finished the appointment and was in the car, I had a meltdown, but at least it was after the eye test and not in the building.
Whew!

I have yet to find a mask/face covering that I can wear without causing me to become dizzier and disoriented (lose my brain). I just ordered another type that is due to arrive this week. Hoping that one suffices.

Now for the good things:
When I though I was going to be without my glasses for awhile while they sent them out to put new lenses in them, I wore my glasses from 2018 and they were perfect. Since then I've noticed that I don't get brain fog in the afternoon/evening.
That is a big plus! The prescription for my glasses that I had been wearing last were completely different from 2018 and 2020 (current), which are exactly the same. Still, the lack of brain fog in the afternoon/evening could just be a coincidence and not caused by my last pair of eyeglasses.

So no more afternoon brain fog is a good thing.
The 2nd good thing is that I realized that my stumbling and lack of co-ordination has a name. It's called Ataxia. (I haven't been diagnosed with it by a doctor, just have the symptoms) I always thought it was just caused by dizziness. It felt like sometimes I was dizzy in my head (the regular way you think) and dizzy/off balance because of my leg muscles, and my head was clear,
Took me 4 years, but hey, better late than never!
So, knowing there was a word for it, I started looking for information on Ataxia. I found a study where they gave 300 mg to 3,000 mg of Coq10 to those with an inherited form of Ataxia and all had improved.
I had been taking 100 mg of Coq10 daily. I decided to try 200 mg in the am and 200 mg in the pm. I've been taking it for two weeks now and my gait problems and dizziness are much less. Hopefully, this will mean less bruises from bumping into walls!

Lastly, I've started taking a drop of Hydroxy B12 and 20 mg of progesterone cream daily and I've been feeling much better and have more energy.
I have taken both B12 and 10 mg progesterone cream in the past, but stopped for awhile because they didn't seem to help.

We shall see. Of course, I have my doctor do lab tests every 6 months to make sure my numbers are ok.

That's enough for now. Back to chelating.

Thanks for stopping by.
Pam