Thursday, June 20, 2019

June 2019

This is becoming just the most insane, health-issues - laden year of my life.  I thought last year was terrible when I kept going into and out of Cymbalta withdrawals.  But now this is even worse.

Well, we don't know what is going on.  My abdominal ultrasound was normal.  My bloodwork was normal.

I have variously thought it was: gallstones, gallbladder cancer, stomach cancer, NET tumor, ulcers, Leukodystrophy, Creutzfeldt-Jakob prion disease, Brain cancer, dysautonomia, Ehlers-Danlos, mitochondrial disease shutting down my stomach and muscles, porphyria, etc etc


I don't know!  I have alot of abdominal pain, but I also have a lot of everywhere pain.

Problems:
I get sick when I eat.
I feel dizzy.
I feel ALOT of pain- pain in different places,
I feel EXCESSIVELY weak.  I have never even imagined the sort of weakness that I feel now, on a daily basis.
Extreme pain and tiredness with eating.
I am very food picky- most everything makes me sick.

Sonya asked what my body pain could have to do with Dad's cancer.  UGHHHH  Why am I even seeing a psychiatrist.  lol.

What's unclear to me, is - is that Gastroparesis (inability to eat), or is this an ulcer (pain from a sore or multiple sores, within the intestines), or just some weird thing that I have never heard of, or literally cancer.  Did I ever have porphyria, or did I just get sick with something?

Lev says that he's sick too- but he's such a stress case.. who knows if he isn't just stressing out about work 24/7.

Uggh I feel sick.

Dr. Berg says that ulcer treatment is: DGL (licorice), zinc-carnosine, cabbage juice (yay!), chlorophyll meaning veggie greens (which of course made me sick).

I suppose I could just try to live, not fix it, and the more symptoms that come up, the more I will be on my way to a (deadly) diagnosis..


I went to the ER twice in the last two weeks.  The first time I was beside myself with having had all these MUSCLE problems over the last two weeks, and had basically felt really sick and unwell and gone into mom's room and said I didn't feel okay.  The second time, luckily dad took me and the place was FREEZING.  It took 4 and a half hours to be seen, I think.  I declined blood tests, because they are always normal.  They didn't tell me to change clothes or to put in an IV.

Wednesday, June 12, 2019

This attack is ending..

I have felt a little better over the last few days.

A little bit and a little bit more today.

Started:
05/25/19
Ending:
06/12/19

What was the trigger?
I have no idea, although it did seem to worsen pretty significantly when I drank alcohol, only one of the times.

EDIT:  It did not end.  Like 3 minutes after I wrote this, I ate some food, and, boom- triggered for an hour now already.


No Diagnosis -- but such severity of issues - am I dying?

Told Kyla that I am dying (so I think).  She said no, you can't not while I'm alive... lol what a stupid response.  But at least I got that out of the way so that she can know why I am not responding to text and stuff, that was a worry of mine.

Lord, I am quite a worried child, am I not?  Why can't I just be free to say whatever I want and feel what I want, express what I want, (dislike what I want!)

Anyways, I basically can't stand, can't lift, can't eat, can't sleep.  My mind (body) just goes crazy at night- all alone with SO many issues that are hurting and taking up my attention.  

I'm scared that I'm going to get a bowel obstruction.  This past week, I've only gone number two ... twice, and they both were really hard pellets, that I just simply couldn't evacuate from my body.

Thursday, June 6, 2019

more thoughts about my health problems which are really bad

I don't know what is going on!  I don't know if this is a leaky gut injecting things into my body, Lyme's disease, cancer (bone cancer, brain cancer, anything else that is causing a paraneoplastic syndrome..)
I don't know! I am having so many neurological symptoms- spasms in my muscles (that thing where the intercostal muscles were so tight! That was crazy).  Dizzy/shaky/wooshing in ears, weakness, tightness, tiredness, vomiting.

I'm also having frequent changes in mood - terribly anxious, then fine, then just miserably sad, then just kind of out of it and without feeling.

Then there's - is it a nutritional thing? Lack of a micronutrient, due to gastroparesis and/or leaky gut.


I must not concern myself with what is going on in my body, since I never seem to come up with any good answers.  But the worse the pain gets, the more it has me going online, which is ugh.

If it was a micronutrient deficiency, would it cause these exact symptoms?  I don't know but seems like perhaps not.  Although the Vit C deficiency thing is interesting, I guess.

So I was going on and on about histamine  But, I suppose that its

Who shall help me?

This is scary!  scary scary scary.

Sunday, April 21, 2019

April 2019 how I'm doing

So- here I am, 4 months into the new year
Here's generally what has been going on

- My body pain is really, really bad.  I basically just can't walk or hold myself up at all.  I don't even feel like I used to feel, which is I used to have the energy to get out and do stuff, but back pain kind of stopped me.  Now I don't even have the energy to go out and do stuff.

-One thing that's changed with the increase in pain (which FYI I believe is due to Cymbalta issues),is I can't sit anymore!  Sitting hurts my entire back, not just my low back, to a degree beyond what it used to.  Also, my legs just don't work either, due to how tight they are.

- I was on Gabapentin this year, and went from initial taking 1mg (1 milligram!!) to taking 600 mg 3x a day, because it felt so good.  Fast forward a month, and things were getting weird.  Like I was having these sensations where I'd be really tight in between my 6 hours doses, then the dose would totally relieve it and feel great! But only for a little bit.  Then fast forward another few months and I was getting serious, terribly painful feeling in my mid back at night- my whole back sort of seizing with tightness.  It was definitely a symptom of Gabapentin, nothing else had changed.

- I wondered how I'd even withdraw from Gabapentin- was it even possible? Because I was essentially having such extreme withdrawal type symptoms IN BETWEEN DOSES.  What would I do without the next dose?
I do remember having the most extreme, severe headache I could ever imagine, when I dropped my first dose of Gabapentin.  I was dropping doses in thirds.  Then the rest of the week was okay.  Then the next week all went to hell- nausea, nausea, I don't remember what else honestly except that I felt really bad.  I spent months in so much pain that I was in bed, almost all day.  I couldn't even go to the animal shelter because walking hurt too much.  Sometimes I'd have this feeling like my muscles would get really rigid or tight, and it would feel like I was being squeezed by a boa constrictor from my own body.  It was HORRIBLE.
Also, an interesting thing to note is that, when I was getting to the end of my Gabapentin taper, I started taking it at half doses- like half of a 300 mg pill.  That was miserable.  It was like my body blew through it in a minute and then went into withdrawal again right after.  It was really scary too.

- I basically spend so much time in bed, and my head/mind just didn't feel right. I didn't feel like I could think.
- So I went on Cymbalta in November 2018 to "help me with this", because I can't make it through this withdrawal.  Well, it just didn't get better.  My pain levels continued to be really high, I wasn't doing much of anything, (internet browsing a lot at home but that's about all), and my head still didn't feel right.

So- I started TMS at SoCal TMS, since A) I was already thinking of doing it and B) I just literally couldn't improve after my Gabapentin withdrawal, so I felt that I really needed a big time solution.

TMS was crazy.  I got tons of pain in my whole body, and excessively tired.  It was dramatically bad. I barely got to session number 12, and then finally I was going to quit.  My insurance paid for 38 sessions (7 weeks plus a few).  I wanted to try it, I wanted it to make me better...

So, I started telling them that they HAD to keep the level down, or I'd quit.  Which they did.  No problem. They couldn't have done that all along? lol. Then I was switched to right sided only, which I tolerated somewhat better, but no change in my mood or anything.


So finally- I didn't KNOW this, but turns out, that that head sensation and lethargy were due to Cymbalta, as well as to Gabapentin withdrawal.  Because lo and behold, once I changed that 20 mg dose to 30 mg dose, the fatigue just left.  Same day.  But then I started having more problems with it. Nausea, it was becoming more apparent that I was having nausea after taking my dose, which I had again been thinking was due to my Gabapentin withdrawal problem.
So- 30 mg isn't good for me, either.  It helped for a few days, I was feeling much more like myself, thank goodness.  But then I realized that it just doesn't seem to be lasting a whole day.  I don't know why.  It doesn't make much sense.  Its like it was lasting half a day, giving me energy but also bad nausea.

As soon as I made that (actually fairly small) switch from 20 to 25 mg Cymbalta, boom, I tolerated TMS fine- no side effects no problems.  Even the treatments weren't a huge problem, although I still got neck spasm many times. We went up to 120% for the remaining sessions left which was two and a half weeks, both left and right sided, versus earlier I'd been at around 80% and barely tolerating it.

I ended up doing an entire 42 sessions of TMS. That's a lot! I've felt absolutely nothing good from it whatsoever, though, now that I'm done with treatment.  Theoretically, that could be because I didn't get a full 25-40 sessions at therapeutic value of 120%, but still, you would've hoped I'd feel something, even small.

So anyhoo, I'm now going to quit Cymbalta, after having been on it for 6 months (holy shit!).  That's by FAR the longest i've ever been on an antidepressant, and it didn't work whatsoever.  Think my overthinking was a BIT better than usual, but not enough to be like, hey I feel fine.  And my general pain and lethargy were so bad, all day every day.

So that's interesting.  20 mg Cymbalta - a low dose, was really fucking with me.  Never would have guessed it, since I remembered having tolerated it fine.

I can't wait to get off it fully and feel more like myself!  A little more energy, a little less pain (well- that part is IRONIC- given that my NORMAL pain levels cause me to be so unhappy).  But I can't wait to get back to THAT.

I got my period!

began 04/18/19

honestly it was just completely out of the blue!

I've been in the worst pain of my life for the last 6 months - from the Gabapentin withdrawal nightmare to the long-term Cymbalta nightmare, so I have no reason to be doing well enough to have gotten my period. lol

But anyways- here's my theories:
1) I took Fluconazole two weeks ago ..  this is definitely possible; I had gotten my period before, shortly after taking fluconazole.  BUT last year I took Fluconazole so many times, and didn't get that many periods, although I did get 4 periods last year, which is enormous for me.  so ?

2) all these peppermint oil (includes thyme oil) supplements- Heather's Tummy Tamers.  Doesn't really seem like the reason, but I saw online that thyme oil will 'regulate your hormones'

3) just because of taking Cymbalta long term.  Doesn't really seem right, since I was on it for 5 months, so A) it could have happened faster and B) I was on Cymbalta other times and didn't get it
But it IS possible, since being on Cymbalta long-term, I haven't had such intense overthinking like normal, and that seems to have something to do with my neurotransmitter levels.  IE- a few times when I had good results from antidepressants, I did get my period

Btw, it did give me the insight, that all that time I wondered how I got my period with doctor Olsen- was it the 5 months of gluten-free, the Takesumi- now I think it was the Prolent/Lentra.  So, I'm totally down to try Prolent/Lentra again, although wow is that stuff expensive or what.

4) I actually think it was the Fluconazole, just due to the timing.  Maybe I should take Fluconazole once a month and just make it a habit.  I can take it when I give Carly her dog meds, LOL.

5) I've been drinking cranberry juice recently, I dunno, who knows

6) I've also been eating a lot of cheese just recently, actually just one specific kind- the Pepperjack Cheese from the Cracker Barrel (tastes really good! I like how thick the pieces are!  I eat that shit like candy)
.. interesting, I just looked at my last period bio, and - I had eaten more cheese that time around, too.

Friday, March 8, 2019

Is it possible that I have a stomach parasite?

My dreams were completely crazy last month around the full moon.
I was wondering it since my stomach has been so messed up, and the trouble with bowel movements making me so sick.  Now, I know that its Gabapentin Withdrawal that is causing the stomach problems, since that clearly happened after I lowered my dose.  And, I ceased to remember that, while I was obsessing about possibly having a parasite.

But it IS kind of interesting.  My dreams were so crazy- up all night, then crazy dreams the week up to and on the full moon.  It ceased, but I started TMS, so that's a whole other factor.

But now..  the full moon will come again in two weeks, so I am curious to see my response to it or not.

edits below:

Thursday, January 31, 2019

How I'm doing on Lyrica / Gabapentin taper

I did quit Gabapentin entirely and went through a week of basically soul-crushing 'hardness' in my entire body.  It was as if a liquid went through me and then turned solid in my veins and muscles.  I was also really, abominably cold.  Like, didn't show my legs for a week straight because I needed clothing to cover them due to cold.  But also terribly hypersensitive to the feeling of clothing, so I basically only wore yoga pants.

Then I went on Lyrica.  It did make me feel like my muscles relaxed.  Although it was like a two-step thing.  I would feel it when I took it (the 25 mg), and it would make me feel something in my forehead and get really tired and kind of dizzy in my thinking.  That  lasted a while - like a few hours.  Then as that slowly subsided over several hours, I got more and more normal feeling. - less body pain, and less forehead pain.  However, My whole body was still incredibly tight due to how I felt after just having weaned off Gabapentin, and that did not go away.  So it was like having less pain on top of tons of pain.  I was wondering why I felt like that but I understand it now.  If I had taken Lyrica without all that excessive tightness from Gabapentin withdrawal it probably would have been better.

Anyways, I went from taking 25 mg Lyrica to 12.5 because of the dizzy tiredness.  I did not get the dizzy tiredness at 12.5  At first it seemed successful on my first dose, then, and perhaps I had poured out more than the time before, I just didn't feel it hardly at all.  Then I got withdrawal symptoms on that smaller dose, and thought, "NAH", and stopped taking it.

So, what occurred after that was interesting withdrawal symptoms- my body got kind of crazy feeling, then subsequently all hard (bad), then the ER thing happened for about a day where my thoughts were kind of flying, and my body STOPPED HURTING.  Then I woke up and felt normal, which for me is calm and back pain.  Which I haven't felt like in a month.  So the withdrawal may be coming to an end.  I'll miss you, ER stuff.  I'll miss how my body didn't hurt.


So, there is a middle ground.  I could have taken around 20 mg.  I think the issue is that it needs to last long enough to completely overlap with the next dose; it can't leave any wiggle room in between the doses.  That is a bit tough for me to figure out because at the 25 mg twice a day dose, I get too tired in the beginning.  (Although I did feel nice and calm for so many hours after that!).  So it's a crapshoot.  And I probably won't ever want to take it for the rest of my life and get addicted to it.

Monday, January 14, 2019

How I'm doing on Lyrica/ Gabapentin taper

I'm doing terrible, I'm unhappy, I'm in ALOT of pain which is not letting me go out and drive or do anything to speak of.  Although I have been to synagogue, it really hurts my neck and I can't stand during the standing prayers.

Okay so here's what happened:  I went to the rheumatologist and got prescribed Lyrica.  I was supposed to taper from Gabapentin at 300 mg every few days.

When I started the taper, I was surprised that my daily waking up in back muscle spasms stopped happening.  I had a few instances of side effects - headaches, but not too much.  It seemed like I was just in a generally huge amount of pain.  My muscles were all tight, I wasn't doing much besides staying home and occasionally walking Carly to get out of the house.  Its hard to explain - I was in more pain, but I was in less distressing muscle cramping.  So I thought I was doing fairly well, all things considered, as compared to how awful and horrible I was expecting.

But then a couple weeks in the stomach stuff really started.  Those fast bowel movements, light colored, and full of gas.  The gas wouldn't go away and it got terrible after a shit.  It was really weird. I'd wake up okay, but then as soon as I ate and had a BM, I'd be in pain for hours and hours.
I tried a slew of antacids over the counter, all of which didn't work for more than a minute.  I tried: Mylanta, milk of magnesia, TUMS, and Pepsid AC.  I had a funny week of trying them and feeling various muscle releasing (for just a few moments), which made me wonder if my muscle pain has something to do with stomach gas?  I mean what?  Why else would it cause that?  But on the whole, I couldn't figure out what was happening.  It didn't go away.  I went on Omeprazole, have been on it for 5 days.

Still taking Cymbalta.

Now as far as LYRICA:
I tried Lyrica once- 25 mg, and felt kind of helter-skelter pain relief.  I tried it because I was in so much pain from Gabapentin withdrawal, but didn't want to take more Gabapentin since I want to taper off it.  I tried it sincerely due to needing pain relief.  I am in more pain than I can tolerate.  Like I can't think or anything in this much pain.  I would if I had to, but its really horrible and I can't move and I can't be happy and I hate my life and should I kill myself, I don't know..?  etc.
I also tried 50 mg and that worked really well, gave me lots of pain relief.  I actually just laid down in bed and ended up napping a few hours. 

So Lyrica is giving me withdrawal symptoms too! After its initial pain relief- and boy do my muscles relax thank god.  Its like a feeling I don't even recognize, but it feels so right.  But anyways, with Lyrica, the pain relief has been sporadic - place to place to place, not all over.  Not only that, but it causes lots of cramping, at the same time as the pain relief.  And then yesterday, I took 50 mg, and got all wierd and pain relief, but,  when I slept i just woke up in pain with spasming muscles.  FUCK ME is how I feel.

What the fuck to do?  When I go off my meds, I get the stomach problem that doesn't go away, and gets worse with time.  And pain.  Which of course I need the meds to help with.  Dear god.  

I am so fuckign frustrated.  I hate that these meds cause me so much pain and cause me to feel like I am in a spiral of increased pain that i am never going to get out of.