Re: Digest Number 2500

[Guest guest]

Thank you for your warm welcome! Yes, now I feel I am surrounded by angels. I am almost in tears right now, it is indeed a very special bond.

and Kathleen, you asked about the pressure in my head and to describe it. First of all, it sounds strange, but I am glad I am not the only one, because I don't have a name for it and it's hard to describe it to doctors.

Basically, if I am in one position for a while, mostly sitting down, when I get up, there is a pounding, sudden rush to my head, I feel it in my neck and my head, like a hose that's had the nozzle shut while the faucet is open and then you open the nozzle and the water just bursts through full blast (that's the image that comes to me from gardening!!). I don't think any head can sustain that kind of pressure for too long. When it happens, if I am quiet and don't move for a few minutes, it goes away. But if I keep walking (sometimes when I am with other people I can't stand there like a dummy, so I have to keep going) I get into big trouble. A couple of months ago, I kept on walking with a student and by the time I got to the lounge, I didn't know what he was saying to me and the pressure was so unbelievable, that I thought I was going to pass out or worse, there and then. So there you have it, as far as I can describe it.

Possible causes:

1. Yes, low blood pressure can cause this, but they can determine that if they take your blood pressure several times when they make you sit down and get up several times. They ruled that out with me.

2. High blood pressure can also cause it. In my case I don't have it.

3. Vasculitis, yes, certainly. That's what my rheumy thinks.

The radiologist report also came back assuming that I had a history of vasculitis and that was related to the stroke, "the sequela of infarct" that he was seeing. He recommended a followup MRI in six months. But then the neurologist dismissed the whole thing and said I didn't need any follow up.

4. From my research... it seems that vasculitis affects the elasticity of the blood vessels/arteries permanently, and that certainly would account for the time lapse that it takes for the pressure to level off. But that's my personal sense, not confirmed by any md. I know a couple of years ago, during a bad flare up that affected my ears, I felt like my brain was also hurting. An ENT did a test because I was losing my hearing and it came back saying that there was an interference between some nerve in the ear and the brain stem. They thought I had a brain tumor, but I was pretty sure it was an inflamation in my brain (which it turned out to be after they took some other kind of test). That would account for some of my left-over symptoms now. But then, again, that's my personal opinion.

5. The neurologist thinks that it's cervicocraneal or cervicocerebral syndrome. I have to have some tests to determine that. But I need a break from doctors and tests, so I am waiting til I come back from vacation. I will keep you informed as to what they finally say.

Well, it seems we have to be sleuths, detectives of our own bodies. But then, we are the ones who know what's happening. One thing I have learned through all these years is: our bodies never lie, they keep telling us when something is wrong in spite of all the outside denials. There is a lot of wisdom in our bodies. I couldn't say that about some md's! I am sarcastic today, but, as you know, I am terribly upset with my last experience.

, when is your surgery? You are in my prayers. May God surround you with loving-kindness.

Much love and prayers to all. Thank you for all the info, I will contact the RP Foundation and Dr. Buckner. Thank you, most of all, for your love and support.

[Guest guest]

In a message dated 5/10/02 7:35:18 AM Pacific Daylight Time,

tutumambo@... writes:

<< ting down, when I

get up, there is a pounding, sudden rush to my head, I feel it in my neck

and

my head, like a hose that's had the nozzle shut while the faucet is open and

then you open the nozzle and the water just bursts through full blast

(that's

the image that comes to me from gardening!!). >>

, that describes mine to a tee. Thank you. Maybe I can use it to

tell the dr next time. LOL They have checked my BP in all positions so that

isn't it and I never have had high BP. I appreciate all the infor you are

sharing with us. See, we can all learn new things daily.

Yes, we are so lucky in this group. You are right, you ARE surrounded by

angels. Each and every member in this group is an angel. I don't know how I

would have gotten through some tuff times without all of you. We are

brought together for a reason.

I hope you all have a wonderful weekend and enjoy every minute of it. I will

be going to Rich's sisters tomorrow and be home on Sunday night. (YES....

you will have a few days free from my posts. ) LOL Please enjoy and rest and

relax.

hugs to you all