# its back



## rainboteers (Apr 5, 2005)

sometimes i wonder if this is a part of why i have dp..... stupid thing is back to haunt me once again....

pseudotumor cerebri poem

Tonight, I sit, at home, alone
My heart strings strike a heavy tone.
How much longer, will I, can I, be alone?

How can I seek your heart to steal?
When my emotions are exaggerated or blunted, but seldom real?
How can you understand, or know how I feel?

Could you be with me if you knew?
If you knew all I am going through?
Like, sometimes, for a moment, I might not remember you?

When my head is full, and it's hard to speak
My tongue is twisted and my mood is bleak
Could you be my strength, as I feel weak?

When I'm weary and tired and feeling the drain
Of the dizzy feelings and frequent pain
Could you be my sunshine, amid the rain?

Could you hold me close, as the room spins 'round
To keep me from falling to the ground?
And could you sing to me above the whooshing sound?

Could help me see, if I lost my sight?
Could you stand with me, in this constant fight?
Should I even be asking? Do I have the right?

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*The PTC Creed*

I promise to accept the fact that I have PTC, a neurological disorder which will limit my abilities in my every day life.

While I will always have PTC, some days will be good, and some days will be bad. I will be thankful for the good days and try to make the most of them. When I am having a bad day, I will try to remember that most likely it will not last.

When I am having a bad day, I will listen to my body, and get the rest that I need. I will let my family know that I am not feeling well, because they cannot read my mind.

I will not feel guilty about resting, because I will eventually begin to feel better, and in the long run, it will also benefit my family.

I will not feel guilty or worry about the work that is not getting done while I am resting. The world will not fall apart without me, even though it looks like it already has.

I will not let anyone else make me feel guilty for taking time out for myself. They will never understand exactly what I am experiencing, the pain I feel, the exhaustion that I feel. They will never understand the fear that I feel when my symptoms creep up on me, and land me flat on my back.

I promise not to feel sorry for myself when I am feeling bad, because there are a lot of people out there who are in worse shape than I am. I will not be sorry for what I don't have, but be thankful for what I do have.

I promise to learn a lesson from my illness, which is not to take life for granted. I will try to enjoy every moment that was given to me, and be thankful for the times I can smile and laugh.

I will try to help others who also suffer from my condition. There are many confused and frightened people who need to hear comforting words from someone who has been there. There are many people who need me to take his or her hand, and be pointed in the right
direction.

Lastly, I will not ask "Why me?" While PTC has weakened my physical body, it has strengthened my heart, my soul, and my spirit.


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## Milan (May 29, 2005)

Your strength and spirit are an inspiration to us all.

From a rainboteers fan.

Take care.

Milan


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## terri* (Aug 17, 2004)

Rainbow...

Here's the deepest, warmest hug I can give.

Here is my hand for your hand to hold, as I hold your hand back. There is strength in holding hands together.

You are precious.

t*


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## rainboteers (Apr 5, 2005)

wow... dont think ive ever had a fan before  

latches on to terri*'s hand and feels stronger already...

thank you both for your sweet words.


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## Guest (Dec 20, 2005)

That was a treat to come across, Rainbow. Thanks.


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## person3 (Aug 10, 2004)

I love your signature quote, rainboteers, and I admire your courage. I'm sure the holidays are quite the stressor for us all.

Hang in there, we care about you very much and that quote has definitely been an inspiration for me!

m


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## Homeskooled (Aug 10, 2004)

Dear Rainboteers, 
I feel very, very, very sorry for you. Because I honestly understand *exactly* how you feel. Because of my porphyria, I developed pseudotumor cerebri last year. I researched the heck out of it. Its been going away as I treat my hypothyroidism and porphyria, but when I got it during an acute porphyria attack.....Holy cow......the feeling in my head was indescribable. My eyes were literally jumping out of my head. I know that the mainstream idea is that pseudotumor is a defect in the flow of the cerebral spinal fluid, but I dont think that theory holds much water, no pun intended. I tend to think that its a manifestation of another disease. One doctor beleives it to be a disorder of total body fluid retention. I think thats probably true, but the question is, why is a person retaining it? Mostly women get it, and I think a ton of the causes for it in women are female diseases. Lupus is cause of it. Hormones gone wrong is another. So is hypothyroidism and kidney disorders. Be sure to get tested for all of these things so you can rule out all the possible causes. Porphyria, which I have, is more common in women, so if you get anxiety for unknown reasons and bad stomachaches, you might want to get tested, but it *is* rare. If everything else fails, you should try getting on a maintenance dose of Topamax. Its helped some DP sufferers, but more to the point, it lowers your spinal fluid pressure, and has a lot less side effects than Diamox, which neurologists use for bad cases. Your in my prayers.

Peace
Homeskooled


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## rainboteers (Apr 5, 2005)

thanks so much for that information homeskooled.. i think i will ask about topomax. i was previously on diamox and that stuff is pure evil.. i had every side effect possible and at one point half of my face went completely paralyzed... very frightening med for me. yes the pressure is so intense.. i often describe as it feels like i could pull an elephant out of my ear. i will mention what you said to my dr. looks like another spinal tap is heading my way... 

person 3 im glad that quote inspired you too, and thanks for your support.


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## Guest (Dec 22, 2005)

Rainbow, do you only use pharmaceutical medicine, or are you open to alternative methods?

Just curious.


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## rainboteers (Apr 5, 2005)

im open to anything and everything that might help me. i recently did reflexology, i love really deep tissue massage therapy, but my favorite and the thing that has helped me the most is cranio sacral therapy. its amazing one session kills my anxiety and gets rid of my headaches for awhile. still this problems requires spinal taps which i recieved one today.. yippeeeee :roll:

the things that are helping me with my health and dp/r seem to be yoga, cranio sacral therapy, breathing, sleeping only 8 hours (even though im dying to sleep 12). when i exercise and get my heart rate up it helps... though i dont do that enough. easiest thing for me to do to get my heart rate up is jump rope.. sounds silly but it burns more calories than anything else you can do, plus its kinda fun. 

ive been eating a macrobiotic diet which also makes me feel better. even though all that stuff helps tremedously i still take celexa and lamictal and that really is improving my dp/r. this psuedo tumor stuff seems to come and go on me and i wish i could figure out why...

i hope some of these suggestions might help someone else too, i suppose i should put this in regaining reality section... sorry beachgirl maybe this is more information than you wanted to know :lol: but im also wanting to let people know whats helping me...


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## Homeskooled (Aug 10, 2004)

Dear Rainboteers, 
How high was your spinal pressure? Upper end of the normal range is usually something between 18 and 22. I've heard of people going up to 70, and when they were tapped, the fluid literally shot across the room. Yes, Diamox is extremely rough. You could probably cut back on the Lamictal if you took Topomax, as both are anticonvulsants. Make sure you get your other medical avenues checked out, though. Other than lupus, there is also another autoimmune antibody panel which usually comes out elevated - if I remember it correctly from last year, its an anti-cardiolipid antibody panel. I would have that done along with an ANA for lupus and all of your hormones as well as creatinine (kidney function marker) checked. If your real ambitious, you can get a porphyrin blood test done, but only if you get liver pains or weird abdominal cramps. I'm not sure, but lamictal may also add to your pseudo-tumor....anticonvulsants have a strong effect on the brain. Have your electrolytes ever come back abnormal? That too can cause it....Sorry for the info overload, but its a serious condition, and needs to be controlled. Good things for you to know. Incidentally, cranial sacral worked for me (only had it once) and lots of patients recommend it. Your in my prayers!

Peace
Homeskooled


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## rainboteers (Apr 5, 2005)

hmm i thought normal upper range was 150 :? , but ive probably got it wrong. i havent had much blood work or other things done but i really do want to try and get to the root of the problem, i dont want to deal with this anymore. i really appreciate you taking the time to give me so many ideas and advice homeskooled, very nice of you, and im going to look into all of it. 

i hope the lamictal is not making it worse, that really worries me :shock:


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## rainboteers (Apr 5, 2005)

oh and the only explanation that i have ever been offered is that it was my birth control pills that caused it.... so ive been of them for years... if that really was the reason why is it still coming back i wonder. i asked them this and recieved a blank stare in return... :lol:


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## Guest (Dec 23, 2005)

Rainbow, what level is your cs therapist certified at? I ask because those who are more advanced and/or who have worked for a long time at cst, would probably have an opinion about your problem and what, if anything, cst could do for it.
Have you emailed or phoned the Upledger institute (cranio-sacral)about your problem? Some people there are quite helpful. 
How long have you been doing cst? I love it and it's helped me to recognize my feelings which I used to deny/block/still do, just less.
You're certainly doing a lot of good things for yourself,(applause).


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## rainboteers (Apr 5, 2005)

hey beachgirl,
my dr. preforms cst on me.. she is well trained and is an osteopathic dr.  
i havent been doing it long at all but i couldnt believe how helpful it was immediately.


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## Guest (Jan 13, 2006)

rainboteers said:


> im open to anything and everything that might help me. i recently did reflexology, i love really deep tissue massage therapy, but my favorite and the thing that has helped me the most is cranio sacral therapy. its amazing one session kills my anxiety and gets rid of my headaches for awhile. still this problems requires spinal taps which i recieved one today.. yippeeeee :roll:
> 
> the things that are helping me with my health and dp/r seem to be yoga, cranio sacral therapy, breathing, sleeping only 8 hours (even though im dying to sleep 12). when i exercise and get my heart rate up it helps... though i dont do that enough. easiest thing for me to do to get my heart rate up is jump rope.. sounds silly but it burns more calories than anything else you can do, plus its kinda fun.
> 
> ...


Okay, rereading this post has goaded me into action - yoga and rope-jumping and beachwalks and more vegies and I'm going to splurge on a couple of cranio sessions with a new-to-me therapist.

How're you doing now, Rainbow?


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