24 Hours Post CCSVI, I feel Horrible ! Please Comment

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

24 Hours Post CCSVI, I feel Horrible ! Please Comment

Postby LymeNurse » Tue May 03, 2011 5:41 am

I was 90% Stenosed in the Left I J and 60% in the Rigth. Azygos was also Angioplastied. No stents.

I know some of what I feel is normal i.e. pain at the groin site, soreness in the Azygos area, soreness in my neck.

But let me tell you guys, what I'm feeling today is very similar to what I feel when I treat my Lyme too hard. In Lyme world we call it a Herxheimer reaction. A Herx reaction is caused by the die off of Toxins. It is thought to cause a Cytokine Reaction where T-Cells attempt to remove toxins, resulting in inflammatiuon and a temporary increase in symptoms and perhaps the onset of new ones. Often, Flu like symptoms will appear during this time.

So, I do feel like I am having a major Herxheimer reaction post CCSVI. It actually started yesterday soon after the procedure. I slept a good part of the day b/c of all the meds on board. I don't feel the meds now, but I do have this terrilbe headache band around the top of my head. I am also dizzy with slight balance issues, which is new to me. I did alot of crying last night and it's starting again this morning. It's not a "I'm depressed" crying. It's more of the Neurological type crying I would get, again, when I try and treat the Lyme too hard. I did not cry for 3 weeks prior to my procedure as I put all of my Lyme treatment on hold, trying to establish a baseline.

I have been freezing cold and chattering my teeth, but the temp in my house is normal. I'm aching up and down my spine and I just feel an overall malaise. The worst symptom by far is that I am very shaky and it feels like my CNS is going haywire. It's not a True Anxiety, but perhaps 100x Worse. I will see my IR today for f/u scan.

I propose the Theory that I dumped a ton of Toxins real fast and they are now circulating in my blood stream looking for elimination. Prior to CCSVI, I propose these toxins were Stagnant in the brain. Because I'm dealing with Lyme, I'm not just talking about Iron deposits, but dead Borrelia and god knows what else.

I would appreciate any and all thoughts. I'm sure this has to be temporary as I was so stenosed, but OMG, is all I can say for now.

Gary Engelman, BSN, RN
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Postby dania » Tue May 03, 2011 6:00 am

Sorry you are feeling this way. I can say that headache is normal. I was told it lasts a few days but for me it was much longer. And my neck was very sore. But I had improvements hours after the procedure. Mind you they were short lived, about a week.
Keep us updated. It is important that ALL stories are voiced.
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Postby Cece » Tue May 03, 2011 6:02 am

You are trailblazing this path for other Lyme patients...now we may know to warn them that the procedure may bring on the Herx response...which is a good sign that it worked but a miserable thing to go through from the sounds of it. Hang in there. Those were severe stenoses. How long does a Herx response last?
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Postby vivavie » Tue May 03, 2011 6:07 am

Did you get an ultrason the day after the procedure? I once felt worse right after because my jugular had collapse.

good luck, I hope this is just temporary...
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Postby LymeNurse » Tue May 03, 2011 6:16 am

Suppose to have 24 hr. f/u with Dr. Today, where he will US the neck. Will report back. There is no question, that this is a Herxheimer reaction.

I've ridden it before, and it is God awful terrible. It will take days to get better, but it will, that, I am sure of... For now, it's alot of feeling sick.. I don't think this is a restenosis issue.

Thx for the quick responses folks..

Gary
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Postby pklittle » Tue May 03, 2011 6:50 am

Contact your doctor ASAP.
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Postby Trish317 » Tue May 03, 2011 7:15 am

Sending you prayers and good thoughts, Gary.
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Postby 1eye » Tue May 03, 2011 7:28 am

Sounds bad. I hope it is only what you say it feels like, and that soon your clearing toxins will allow you to feel some improvement. Breathe well.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby blossom » Tue May 03, 2011 12:00 pm

i feel so bad for you with no advice to give you. we are all so darn different. but, wil keep you tucked in my prayers and hope relief comes soon.
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Postby AJMcE » Tue May 03, 2011 12:37 pm

Doesn't sound good.

I had a minor blockage which was ballooned.

Just after the procedure I started shivering and shaking. The IR thought it was an allergic response, so gave me steroids. Stopped shaking, but stayed horribly alert and ratty for the next 24 hours, also had high temperature the following night. ,also, don't ever underestimate discomfort in the groin.

Prior to the procedure my blood sugar was low (below 60 mg/dl) so don't know what the cause was blood sugar or something else, no problem since procedure

The thing is it did pass, but it didn't feel good while it lasted.

However, after a few days it did subside, and things really did feel better for a while, than before procedure. Hope it passes for you.
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Postby Filmmaker » Tue May 03, 2011 12:39 pm

well i guess openning veins allowed your immune system to access the bugs...
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Postby bluesky63 » Tue May 03, 2011 1:42 pm

Don't ever assume you know what is going on!

My deepest sympathy to you and what you are going through, but you just cannot assume you know what is going on inside your body. You say you feel llike you have the flu. Suppose you do? Suppose you have a hospital-acquired infectiion? Suppose you are having a reaction to a med? Suppose it's thrombosis?

You really need to be working hand-in-glove with a medical team on this. I am so, so happy to hear you are going back to the doctor. Anyway with lyme you need to take baby steps and not slam yourself with too much for your body to handle!

Hang in there! Take care of yourself! :-)
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Postby Filmmaker » Wed May 04, 2011 9:06 am

I hope you feel better today!
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Postby LymeNurse » Wed May 04, 2011 4:58 pm

Still feel like Crap today.. Anxiety has been topped out and emotions are all over the place. . I hope this is just a healing crisis.

It is not a true Flu. Lyme patients treat and kill Lyme. If you have CCSVI and Lyme, then Toxins can get trapped in the brain. Should be no different then Dr. Z's finding of Iron deposits.

Open the Veins and it all poors out right ?

The next few days will tell.

I have clotting issues too and trying to address these at the same time.. I have hypercoagulation issues..

Keep you all updated,

Gary
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Postby Cece » Wed May 04, 2011 5:52 pm

did you tell your IR about the hypercoagulation? He may have taken it into consideration when choosing an anticoagulant.
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