I'm rougher than I mean to be. Sorry!

[Pixie-elf]

Hi guys!

Sorry for my rough re-entry. I probably should have held my tongue, but... Oopsie. My filter is broken, as we all know. There is no fixing it. I'm a little bit cranky (okay, probably a lot cranky.) due to not feeling so hot after my Xolair injection. They kind of piss the beast off. Or it seems to. Generally I feel like crap the week after then get better. Found out the cause for all of my allergies, likely mastocytosis, just can't confirm without a bone marrow biopsy... And my doctor does not want to put me through that.

For which I'm thankful. We've pretty much confirmed it without that. I'm borderline on my prostaglandins, and I'm on a crap ton of things that inhibit prostaglandins (Birth control, Magnesium, Bromelain, Amytriptaline, a few other things I'm probably forgetting.) and my histamine in my urine test is high. So we started the Xolair treatments in December. And I haven't had to use epinephrine in 3 months! Which HOLY SHIT. That's like a total miracle for me! Since I was like 16 I have had to use epi at least once a month, if not more. Last year it got to the point within a 1 month period I had to use it 8 times... Which pretty much was scaring the everloving hell out of my doctors.

So the fact that my disease has suddenly improved since the once a month injections is amazing. That's not the best part. I've also finally gotten to where I can tolerate the heat without hives! Last week I took a walk in the sunshine, in 87 degree weather, and I got my first sunburn since I was 11! A sunburn might not excite you, but I didn't even know it was happening! I also didn't vomit all over the place due to the heat! That's never happened before! Normally 75 or above and I start the vomit comet!

I also take walks, maybe twice a week... 2 miles to 4 miles, trying to recover my strength from the pamidronate infusions. Basically I had all of the fun chemo reactions you could have to it. It was to fix the osteoporosis, and worth it... No new fractures since! But I was miserable. I also vomited a lot, food tasted like dirt, and only one week out of the month was really good. I eventually dropped too much weight to continue it. The Xolair should cure the mast cell disorder, which in turn, should cure the osteoporosis, in theory... So I have a possible cure for some of my conditions!

On the CH side of things, I'm maintaining with botox, DALT, and D.H.E. I forget to take the Dalt at times due to other brain issues. Botox lowers the intensity, but I'll take anything at this point. I had 1 month free after a Ketamine infusion last year. It was AMAZING. No clusters or migraines.

I still can't really do the D3 regimen because of my issues with idiopathic intracranial hypertension. Currently we have to run my shunt at low level to prevent me from going blind, so I've usually got a low pressure headache from it unless I'm laying flat, or have drank some form of caffeine. I've fixed it somewhat with the Nexplannon Birth Control implant to kind of boost my spinal fluid. But with as bad of pressure headaches as the large doses of vitamins tend to cause me, I'm afraid to try it, and due to the fact it could risk my vision. There's also the fact that with mast cell disorders, you tend to have problems with absorbing vitamins. So I'm not exactly sure if it would work with me? 

So yeah. Still foul mouthed as ever. Still taking care of Mom when she isn't taking care of me. Spend time outside now along with playing video games. Also have started planting things, which makes sure I get up every day and water something other than my cats even when I feel like crap. Trying to become a little bit less disabled. Oh, does anyone have any good books to recommend? I go to the library a lot. I love me some fantasy and sci-fi.

I love y'all, I have never forgotten about you and appreciate everything you have done for me. <3

[urs Brasil]

Hi Pixi_elf, great hearing you dealing much better with your complex situation. You are a real fighter isn´t it ?
On a scientific basis I can't help and of course did not have enough time reading through your history on this site. But I have two point I would like to point to.

-High histamine level
Beside your current medication on this (is it Xolair?). Did you know fresh pineapple, not the canned one, are very potent antihistamine? Should to be even better than benadryl. If you can eat this fruit, go and get one, the most green and hard you can get should be much more tasty. Do not cut and trowing away the center which is a little bit harder den the rest.

-Sleep/napping
Needless telling napping is one of our very bad trigger when in cycle.
Having spend a live time in IT I confirm this kind of workload specially when working more than usual eq. >8h/day, it is very easy going into an altered mind state. Like extrem sport/outdoor activities do so too (of course this is a kind of drug abuse
But after it is quite hard to come down and going to sleep. Playing video games for a long period before going to bed must have the same effect. Interestingly I make the experience reading books before going to sleep has to opposite effect. It calms me down, putting me into a nice sleep, well normally not every time.
I know melatonin too but I have an alternative recently found: First generation antihistamine make sleepy and may be OTC available also in your country.

And you being rough? No no. We do not have to excuse or justify ourselves being humans  (just to give an idea how I did interpret your recent writing)

Give yourself from time to time a break and do NOT research on your health issues. Take a few days in a row a break by not researching  and thinking about it.

Food tastes like dirt? I now this too using Cymbalta. This is very nasty/ugly to me as my mom was from italy and tasty food is so important to this culture. This problem is med based and I know how it is put me too, I don't have any clue on this one.
But go on! It seems to me you are a very strong person, already having done big steps into a healthy future 

 

[Pixie-elf]

Oh food tastes wonderful now that I'm off of the pamidronate infusions. I eat plenty now. I just seem incapable of gaining weight. (I guess because my body is still rebuilding my bones I think?)

I'm on a LOT of antihistamines. I take Bromelain, the anti-inflammatory ingredient in pineapple. I actually have a pile of research links on it. I started using it because it's believed to reduce bradykinin in the body, which is believed to play a role in pain... but it's also a prostaglandin inhibitor. So I take 2000 GDU's / 500mg of it a day. I know it helps my over all body pain, and allergies. I don't go without it except right before surgeries! It's also really a great supplement to add to the D3 regimen, as it's a potent anti-inflammatory.

Antihistamines don't make me sleepy as I've been on them for so long that they have no effect. I can, and have, taken 150mg of Cetirizine without getting sleepy. (I was taking that much about 10 years ago at one point.) I currently don't have to take that much, thankfully. I'm down to just 20mg per day of it. 80mg of Famotidine, and 4mg of Ketotifen. I'm allergic to Benadryl. From taking way too much of it at 16 to combat allergic reactions...

Currently for sleep I take the Melatonin and 150mg of Trazodone. Most nights it knocks me out. Some I have more trouble. I sometimes take breaks from playing games, and I don't really notice a difference in quality of sleep. I think my brain is just super fucked up. XD

I do take breaks from research, but researching kind of keeps me sane at times. I like helping people. Most of my friends know that they can call me or send me a message and ask "What do you know about x procedure?" "Have you ever had x done?" or "What can I take for x problem?" and I usually have an answer... Mainly because either someone in my family has gone through it, or I have. It gives me a purpose, and at least makes having gone through all of this worth something!

Plus, it's fun finding things that the doctors didn't realize was going on!

Thank you for your kindness and understanding. <3

[urs Brasil]

you are welcome

 

[ThatHurtsMyHead]

It's great to see you around the board again Pixie...

J

[registrateyourjourney]

Wow what a complex story Pixie-elf. Hope you will find solutions that will make you feel better but I suppose finally walking in the sun will give a lot of positive feedback and energy.

Do you use the app I've made to keep track of symptoms and what you do top feel better?

 

[Pixie-elf]

I use no apps for tracking that, pretty much. Because it's generally a lot of 'jack' and 'shit'. XD Only rarely do I take the D.H.E. because my doctor is kind of picky about it.

Probably also because it's so instilled in me that "CH is normal" for me that I don't register that it's a different state of being, or assume I should make note of it, unless a doctor asks me to. And none of my doctors bother to any more. It's been a while since they asked for a headache diary. So when a CH happens it's more like "Oh, THIS bullshit again."

[registrateyourjourney]

Hi Pixie-Elf, Thats no problem. I find that some people love to know how they've been doing exactly last week, month or the year ago compared by now. 

But I also meet people that go like: Tracking? Tracking? I want to forget as soon as possible.

So no problem, everybody needs to do what they think is right. I do have to say that the app I made is made because of the reason you say. Most apps are a "jack of shit" because it takes to much effort to register one item, are limited in what you can register and often we can't even get a good view on the amount of attack, moments of it or intensity because its all stuffed away in agendas.

Mine is just pressing a button to register an attack. But the same for medicine, therapy or even Mastrubation hahaha
Basically anything a person finds important to remember can be registered by pushing a button, so even with other diseases you could use the app. Now, a MS patient that is Diabetic and has Migraines, should download 3 apps, one for every disease.

I started tracking my attacks, medicine (imigran), MM use, Vitamin D and the coffee I drink. So I started the app with around 15 buttons (these and the therapies I did) Now we have around 250 different buttons all requested by other patients. (Cluster, Migraine, MS, Diabetics) So people do a lot of different things to feel better.

Knowing that there is no straight solution, I think a small solution can be lowering attack frequency or intensity. If you get it lower with one solution, you can try another to see if you can get it a bit down again. I can only do this having a clear view on what I did and how I was in the past.