Erika`s procedure in Poland

[ErikaSlovakia]

This is a miracle for me: I am on 150 mg of Carbamazepin a day only! I can not believe it. Last night was the 4th night I took only 150. I do not feel any pain. Only sometimes I feel very little stiffness of muscles. I use sezame oil and massage it for 2 minutes.

Just as everybody I am fed up with MS and all the complications around: doctors, social life, money, patients, sitting whole day only in my cold room because it is hot outside, yes I can read some books but do not forget my problems with vision.
On the other hand I really should not complain. I had the chance to visit maybe half of the world, I have 2 University degrees and I HAVE A STENT and I only take 150 mg of Carbamazepin - I never liked the side effects so I am happy of course.
Erika

[ErikaSlovakia]

Good news with little complications.
I am without Carbamazepin for my nerve pain since July 7.
The little complication is depressions. Carbamazepin contains some antidepressants. I knew it and as you know I was cutting Carbamazepin step by step but... I started my sleeping pills again about 6 weeks ago. I feel depressions during the day as well so I have decided to call psychiatrist for an appointment. She will maybe help me with my high pulse as well. I think I have been suffering from panic attacks but I am not sure.
So I will see the doctor at the end of this month.
It is very hot in my country — often 100 F so I sit at home all the time or in our basement. I feel better in the evening - all the years with MS.

So, it took me 8 months after the procedure not to feel the nerve pain. I spent more than 3 years on Carbamazepin.
Talk to you later
Erika

[Zeureka]

Good news with little complications.
I am without Carbamazepin for my nerve pain since July 7.
The little complication is depressions. Carbamazepin contains some antidepressants. I knew it and as you know I was cutting Carbamazepin step by step but... I started my sleeping pills again about 6 weeks ago. I feel depressions during the day as well so I have decided to call psychiatrist for an appointment. She will maybe help me with my high pulse as well. I think I have been suffering from panic attacks but I am not sure.
So I will see the doctor at the end of this month.
It is very hot in my country — often 100 F so I sit at home all the time or in our basement. I feel better in the evening - all the years with MS.

So, it took me 8 months after the procedure not to feel the nerve pain. I spent more than 3 years on Carbamazepin.
Talk to you later
Erika

Dear Erika, I think to have depressions is normal there and then (even for non-MS people!). For me the best psychiatrists so far have been some amazing real-life friends (best detached from family) and also somehow in certain periods the internet

And if you have now - being just off from a medication that you have been using for such a long time(!) - some depression phases is more than normal. So it's good you recognize it and are seeking help. This alone shows that it will help and I send you courage that you'll soon feel better again!

And so happy for you that the nerve pain gone without med now!! We all admire your energy and strength and you'll also make it to get over this medication-withdrawal - I'm sure! Best wishes Steffi

[ErikaSlovakia]

Fatigue is still my problem number 1 (or again, because I really felt better the first 33 days after the procedure). I think I will start with Vigil tomorrow again.
I almost do not feel any fatigue in the evening.
Good thing is that I do not have the nerve pain anymore.
However, I do not know what the future brings.
So, fatigue, heat and physical activity is still big NO, NO.

Talk to you later...
Erika

[seeva]

HI ERIKA
Congratulations. great to read & best wishes for recovery.
regards
seeva
:roll:

[esta]

long time no see erika
great news re nerve pain meds...i think we think too much sometimes...depression that is drug induced is creepy...it will lift and you can be your normal happy self soon, i hope.
i'll be back in katowice aug 24th, for the 2nd time, praying for a stent so i can just get on with my life...thats all i want, to feel good and see improvements...you are an inspiration, thats for sure come this way in your world travels...we'd be thrilled.
diane and ron

[ErikaSlovakia]

long time no see erika
great news re nerve pain meds...i think we think too much sometimes...depression that is drug induced is creepy...it will lift and you can be your normal happy self soon, i hope.
i'll be back in katowice aug 24th, for the 2nd time, praying for a stent so i can just get on with my life...thats all i want, to feel good and see improvements...you are an inspiration, thats for sure come this way in your world travels...we'd be thrilled.
diane and ron

Dear Esta
I have been thinking and comparing. My BP went lower day 34 after my procedure. And really, since that time I do not feel as good as the first 33 days - I am talking about my fatigue and energy. Anyway I will know more when Dr. Simka checks me again. I go to see a psychiatrist in 2 days finally. I hope she gives me some mild antidepressants. To be honest except for MS and CCSVI I really have reason to be depressed. It is the 2 courts. It is so stressful and it takes too much time. Both cases are in reality very simple.
On the other hand I should not complain because you saw me, you know I am able to walk just with one cane, I was able to come by bus by myself...
I wish you all the best for Poland, I wish you they find all the problems and all of them will be treatable. I wish you to have constant relief.
Erika

[HappyPoet]

Erika,
I am another fan of yours who has been with you from the beginning.
Your doctor will be able to help with a mild antidepressant.
I am VERY happy that your pain is now gone!! How wonderful for you!!
Not having a relapse in over eight months is fantastic news and brings HAPPY tears to my eyes.

Best wishes,
~Pam

[ErikaSlovakia]

9 months after my procedure in Poland

Except one thing I still have the same symptoms as before my procedure.
My nerve pain in my right arm is gone since 8 months after my procedure. My pain started in 2005. I started with 1200 mg of Carbamazepin. Now I do not take any.

My fatigue was better only the first 33 days. My BP went lower (90/60) the day 34. I do not know why.
I do not have any new symptoms, I have not had any attack, Nothing is worse.
I still walk with one cane. I especially do not like my fatigue, dizziness and brain fog.

One short interesting story: I went to see a psychiatrist after many, many years. I wanted to ask her for some very mild antidepressants. She gave me 3 drugs. I felt so much worse. My BP went lower (90/60).
I was very weak, extremely strong headache, fatigue, dizzy a lot, could not fall a sleep anyway. I was almost crying because I felt like crap. I stopped with all the pills and will give it back to her.
I will simply continue with 1/2 of my Zopiclon to be able to sleep. I do not feel OK but much better than with the crazy pills.
It was like when my attack starts. Very scary. I am fine now.

I will do no more experiments. I will wait until Dr. Simka checks my veins in October.

Erika
[/b]

[trapatron]

U for sure have more bloodflow issues. Its a mess one have to wait for so long to have that checked up.

[ErikaSlovakia]

U for sure have more bloodflow issues. Its a mess one have to wait for so long to have that checked up.

I had my first checkup 77 days after my procedure (January 2010). Since that time I know my bloodflow is too slow.
Dr. Simka (and also others) are working on that issue.
I wait for more knowledge not for the checkup.

When we find out what is wrong and how to fix it, I will inform you.
Erika

[Zeureka]

U for sure have more bloodflow issues. Its a mess one have to wait for so long to have that checked up.

I had my first checkup 77 days after my procedure (January 2010). Since that time I know my bloodflow is too slow.
Dr. Simka (and also others) are working on that issue.
I wait for more knowledge not for the checkup.

When we find out what is wrong and how to fix it, I will inform you.
Erika

You may have other veins that are stenosed? Will Dr Simka check that? I mean not only the azygos, but maybe other lumbar veins (for example iliac or other next to vena cava) - or even in brain the sinus ones?

Also, you could maybe ask Dr Simka to use IVUS in the venography of for example your azygos vein as he might find more? I think the hospital has the IVUS equipment, but they say it costs a lot...and they only use in special cases.

Keep up! - and yes - throw those antidepressants in the bin if they make you feel worse! Better trying to resolve the underlying issues than taking more meds with side effects!

And chat a bit and see some good friends to lighten your heart, that can help sometimes. I know it's not easy to say this...but you will see the ups and downs will turn also into sunshine at some periods! I deeply wish you so! Warmest wishes from a Katowice friend - I'll never forget that exceptional day with you in the romantic snow - I remember it like in a wonderful dream - thank you Erica for the warmth you bring to all of us

[ErikaSlovakia]

U for sure have more bloodflow issues. Its a mess one have to wait for so long to have that checked up.

I had my first checkup 77 days after my procedure (January 2010). Since that time I know my bloodflow is too slow.
Dr. Simka (and also others) are working on that issue.
I wait for more knowledge not for the checkup.

When we find out what is wrong and how to fix it, I will inform you.
Erika

You may have other veins that are stenosed? Will Dr Simka check that? I mean not only the azygos, but maybe other lumbar veins (for example iliac or other next to vena cava) - or even in brain the sinus ones?

Also, you could maybe ask Dr Simka to use IVUS in the venography of for example your azygos vein as he might find more? I think the hospital has the IVUS equipment, but they say it costs a lot...and they only use in special cases.

Keep up! - and yes - throw those antidepressants in the bin if they make you feel worse! Better trying to resolve the underlying issues than taking more meds with side effects!

And chat a bit and see some good friends to lighten your heart, that can help sometimes. I know it's not easy to say this...but you will see the ups and downs will turn also into sunshine at some periods! I deeply wish you so! Warmest wishes from a Katowice friend - I'll never forget that exceptional day with you in the romantic snow - I remember it like in a wonderful dream - thank you Erica for the warmth you bring to all of us

Hi Steffi!
Yes, there are more possibilities what is wrong and where with my veins.
As I was only patient #2 in Poland I have been fully aware of the "journey"
I stopped the stupid antidepressants after 4 days. Carbamazepin contains something similar to antidepressants. As I do not take it anymore I feel little depressions - not because of CCSVI neither MS. Just as anybody I also have some stress that creates depressions - but I feel it only sometimes. My BP and pulse are today as before: 130/85, pulse was even 135 because I read a statement of a Slovak neurologist - second Dr. Colin R.
Do not worry people, I will find out what is wrong!
Erika

[Zeureka]

Yes, don't forget you're lucky girl !!

[ErikaSlovakia]

I went to see my neurologist today to ask her for a recommendation for an MRI (brain and C-spine). I wanted to compare the difference between my procedure in Poland and now - it will be one year.
She cannot give it to me.
Well, those are the rules of the game
Erika