canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi Friends,
Well, something major has happened for the better.
I've started taking Lyrica which as many of you know is used to treat partial seizures, as well as neuropathy.
Last Wednesday night, I took my first dose. I knew soon after taking it; I said to myself, "There is something to this..."
By day 3 it was the difference between Winter and Spring.
As many of you know from my posts and my sig., I've been a mess; in excruciating pain when the light is on me, confusions, trying to go up the down escalator until the last minute when I'm about to put my foot down, and I realize my perception had been reversed (I wondered why everyone was lining up at the other escalator, but thought they were all wrong, because clearly the one I was going for was the correct one).
Spasticity (if you don't know what this is, look it up: it's when you're muscles all tighten up - I only got a name for it a few weeks ago); Vertigo events; Vomiting and diarrhea episodes that went along with the spasming and the vertigo, and the searing pain and somewhat "out of it" feeling. And that inflammed feeling of my brain not having enough space in my skull because it was inflammed.
I'd been to two neurologists, suggesting to them I'd been having seizures. I was patronized repeatedly, and it was a horrible experience.
Dr. S. gave me the Lyrica 4 months ago, but I was afraid to try it (side effects), plus on some level I didn't want to believe that I was right in my assessment that the doctors other than 2 I'd seen were really as incompetent and full of apathy as I was forced to consider through experience.
Well, if those doctors had been doing their jobs with as much integrity and commitment as myself and my colleagues approach life with, one of them would have figured out that I'd been having seizures 3 1/2 years ago (this became critical 4 years ago - I'm giving them the benefit of a more than reasonable 6 months' time). I wouldn't have had to sell my house, my sports car, my other " beater" car...cont'd
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
Wonderful to hear, wonderful to read*)!*)!! *!)*!)*!)*!)*!)*!)*!)*!)*!)*!)!*)!*)!*)*!)!*!
I love it when this happens!!
YOU DESERVE IT*)!!! Good for you*)!*)!
Sincerely,
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
...my career wouldn't have had to grind to a halt, my confidence wouldn't have had to concede to confusion, etc. etc. oh yeah, and I wouldn't have had to dress up like every other neuro sick person covered from head to toe and have people treat me like I'm a pariah, and also become housebound on and off because I was so incapacitated. On a positive note, I have gleaned some wisdom, to cut a very long story short about the positive growth I have gained through this experience.
Let's do some math? 20 seizures / day multiplied by 365, multiplied by 4 years comes to just under 30,000 seizures. No wonder I was such a wreck! I think I did remarkably well, considering what I was impared with, and dealing with a whole country's health care system that I have no other choice to conclude is one big Kaiser.
I should mention, just to be clear, when I'm estimating 20 seizures / day, I'm speaking of mostly simple partial seizures; including 1-3 more involved and horrible complex partial seizures. Of those more horrible complex partial ones, 3-5 / week included vomiting. So yea, 30,000, but of those I'd say 17% of them the horrible variety. Not to minimize the disabling rest of it.
Sure, we have "No Lyme in Canada". But leaving me here with seizures for 4 years, while I actively saught medical attention, is appalling.
Trying to find a decent neurologist here; I'll keep you up to date. If I can't, I'll have to go to one in the US.
I'm sitting outside at an outdoor patio, with gloves, hat and sunglasses on the table (mind you, I'm still wearing a headband to cover my forhead from the light). I'm not saying I'm entirely asymptomatic, just that things are becoming somewhat bearable, and that I could have been on anti-seizure meds with the Lyme treatment, all along. Thank goodness I went to see Dr. S. 6 months ago. What a difference.
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posted
Tremendous news! It's great to hear about someone's improvement.
Thanks for posting, Dave
Posts: 175 | From Colorado | Registered: Feb 2007
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Great to hear, so glad something is helping you!!!! Posts: 6641 | From Michigan | Registered: Jun 2001
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
"Let's do some math? 20 seizures / day multiplied by 365, multiplied by 4 years comes to just under 30,000 seizures."
I am glad to here that something is finally making life more bearable. So sorry to hear all the dr's you went to for help were such ding dong's.
I am so glad YOU figured out what was wrong and eventually found someone to just believe you.
How pathetic is it that a neurologist cant diagnose seizures... even if they don't believe in lyme as a cause .... a seizure is still a siezure which occurs in the organ that is supposed to be in there domain
posted
As far as I am concerned, Lyrica is a gift from the pain and suffering gods.
It works better than Neurontin and far less side effects.
For me, Neurontin made my vertigo UNBEARABLE. It exasperbated my tremors. Lyrica does not do this to me AT ALL.
On Lyrica, I took it slow at first because I was afraid after the Neurontin experince...
However, I am up to 3x a day. LLMD says she is going to increase it when I go back on monday...which is fine with me. I tiny bit of sleepiness, a tiny bit of lightheadedness early in the day...and I am HUNGRY all the time. I gained weight on it...also a plus for me as I was underweight.
LOVE IT. I am not pain free, but my narcolpesy is better as a nice side note and my headaches are less frequent and less intense. Still stiff and sore but not in agnoy all the time.
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frakktured1
Unregistered
posted
OOHHH CANADA!
Way to go. However what with the Canadian/American exchange rate It's only 29,200....
But still very very good for you!
I got some of that stuff and I looked at the side effects and said....uh uh. Not this guy!
I'm really glad it worked fine for you however.
Hey, I was'nt having seizures either, just neuropathy.
You sound like you really needed SOMETHING!
I'm surprised though that the IV abx's never worked on your neuro lyme. Or did'nt you get any IV's?
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Now I'm 10 blocks West, and sitting outside a different coffee shop, and having half a cream cheese bagel with smoked salmon, and an iced latte.
I've got the phedora back on, and the walking stick, and the dark glasses on the phedora, so I still look a bit neuro, but I'm outside!!
To answer question: 6 months ago, it was far worse. I am now on Bicillin, and it has made a huge difference.
I've never been on IV; the Ontario doctor who "treated?" me refused repeatedly. He did give me huge pots of amox for 8 months, which helped only marginally.
Dr. S. suggests that the orals didn't deal with the borrelia in my brain. No kidding.
I was getting progressively worse, and at that point, after 4 years of significant disability, I said to myself, "Either I seek out the best treatment I can find anywhere possible, or else -- I didn't know what was going to happen next. I had searing pain all over my body almost incessantly, which was exacerbated by light, and it hurt so badly behind my eyes, it felt like, "Take them out!!". I felt like I was on fire.
I was spending my days in excruciating pain in the tiled bathroom, with the black bristol board covering the window routine (I know this is not unique).
I was basically housebound, and vomited at least every two days, with muscle cramping, a enflammed brain feeling, and muscle weakness and exhaustion afterward. Basically. I had to be wheeled for any distance, and when I first went to see Dr. S. by plane, we stayed downtown, and I had to physically lean on my friend 98% of the time. I could walk 3 blocks max / day, more than this would trigger an event with vomiting.
The light made me feel like I was being beaten all over my body.
Things have improved considerably in the 4+ months on Bicillin. It's going to likely be another 2 years of treatment for Lyme; I've been definetely infected since 97, and disabled since 2003.
Nancy: I completely concurr. In fact, I'm going to have to cut this short, because I forgot my Lyrica at home, and have got carried away with my cinderellaesque freedom. xxxxxxx
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Itsy_bitsyone
Unregistered
posted
Frak,
Literally, its not as bad as it sounds. I tend to be rather susceptible to side effects and Lyrica is the first med like this that I have been able to take without serious side effects.
I was on Neurontin/Gabapentin for a few months and it really made me nuts. Now a lot of people can take that without a problem. Its the same sort of med...partial complex seziures and neuropathic pain. Its approved for Shingles pain in particluar.
Lyrica is approved for those things as well, but it is also the first med also approved for fibromyalgia pain.
You also need a MUCH lower does than gabapentin to achieve a better effect. You do not feel drunk or high...a little lightheaded as you up the dose. Its not like a hyrocodone feeling. A little sleepiness...but it has helped me sleep better and get through the night with less narcolpesy symptoms. Other than that...the constant hunger I have is the only symptom of concern. Which is why Can is sitting at a cafe as she types...probably MUST be near food...
I do have palps anyway, but I am hoping that will get better now that I have added the coq10.
Like I said, I am not pain free. I don't expect to ever be pain free, unless they set me up on an open-ended oxycodone drip (NOT! ha ha) because I had lyme too long to ever fully recover, and I will have arthritis forever with the massive amount of joint and spine damage I have. However, I have improvement that is measureable for sure.
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Thank you for sharing. My daughter started Lyrica a few weeks ago. Her doc is only prescribing one a day. Now, I know you can move up to more, may make it more effective.
I wish she would be able to go on IV..she has a lot of neuro problems, but has improved.
Right now, it's in her spine causing her mucho pain.
Thanks for the update. I am sorry you have been sooooo sick. It sounds like a nightmare.
quote:Originally posted by canbravelyme: I should mention, just to be clear, when I'm estimating 20 seizures / day, I'm speaking of mostly simple partial seizures; including 1-3 more involved and horrible complex partial seizures. Of those more horrible complex partial ones, 3-5 / week included vomiting. So yea, 30,000, but of those I'd say 17% of them the horrible variety. Not to minimize the disabling rest of it.
I am sure glad that you feel a bit better. I know seizures like that can take a lot out of you.
My son 'had' upwards of 60-100 a day 'at his worst'. Most were simple partial but several were complex partial and they tended to secondarily generlize at a rate of 10-20 a day.
He is doing so much better as treatment goes along but I had to just go and pick him up from school as he had another vomiting episode. Probably a complex partial.
He is down to about 2-5 simple partials a week , an occasional complex partial, and only having generalized seizures, during sleep, about once every week or two. Yipeee!
I wish you all the best... I know it can be tough.
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thank you all for sharing / your replies; it's been wonderful to be able to share this positive experience with you
quote:Originally posted by MamaWolf: I am sure glad that you feel a bit better. I know seizures like that can take a lot out of you.
My son 'had' upwards of 60-100 a day 'at his worst'. Most were simple partial but several were complex partial and they tended to secondarily generlize at a rate of 10-20 a day.
He is doing so much better as treatment goes along but I had to just go and pick him up from school as he had another vomiting episode. Probably a complex partial.
Hi Ro,
I am so glad you posted; this is so interesting to me.
I say that I've been having 20 avg. per day, but it may be more. Who knows? I still haven't had a neuro diagnose me; it's just been through my own persistence and research and communicating with others who are inquisitive about life, and now being on the Lyrica, and responding exactly as one of Pfizer's test groups who had partial seizures did, that I've had to conclude for myself that these are seizures.
And thank Goodness for Dr. S.
Before I go on, Ro: What is your son taking to control his seizures? How and who diagnosed him, and how long did it take before the events were recognized as seizures?
quote:Originally posted by Kelmo: Thank you for sharing. My daughter started Lyrica a few weeks ago. Her doc is only prescribing one a day. Now, I know you can move up to more, may make it more effective.
I wish she would be able to go on IV..she has a lot of neuro problems, but has improved.
Hi Kelmo:
Why can't she take IV?
and added to Kelmo, Hi Frak,
I ramped up the Lyrica in one week. I had very few side effects. I felt a bit "drunk" on the first day; by day 2 it was pretty much gone; day three, I was pretty much fine in that regard.
I am still impaired, but I think it's the seizures and or whatever is going on in my brain that are not entirely resolved. But I am clearly so much less impaired than without the Lyrica.
Frak: What convinced me what a woman I stayed with while I was in California seeing my doctor,
"Sure it may make you a bit impaired, but pain makes you impaired"
Then the next day, as she drove me to the airport, I had a seizure right next to her in the car, vomiting into a bag.
I'm only about 1/16th available while I'm having a seizure; using my skill of mindfulness to focus and prevent it from progressing (works about 24% of the time). I'm also in a state of some confusion. Most of the day, I experience some confusion, because from what I can figure, I'm having simple partial seizures. And when there's pain from muscle cramping, the pain and communicating mindfully with that state is mentally and physically involved.
So, ask yourself: How impaired am I? How much is the suffering occupying your consciousness? Is it more, or less, really, than feeling a little drunk?
In the end, I am suffering very few effects from the Lyrica. In fact:
quote:Originally posted by Itsy_bitsyone: Other than that...the constant hunger I have is the only symptom of concern. Which is why Can is sitting at a cafe as she types...probably MUST be near food...
Sorry, Nancy. Quite the opposite. I'm suddenly feeling quite fine without food for the first time in 4 years. I think I was "starving" because I was:
a) Eating because I felt like I wanted to ingest SOMETHING that would help me.
b) Because I'm not vomiting every 2 days average, which would make anyone hungry.
c) Having seizure after seizure. Many of us know how unsettling the confusion symptom of Lyme can be, and then there was to some degree, the eating to soothe oneself -- in fact, I'm now wondering if that Lyme symptom,"confusion", is actually an indication that there are seizures going on?
[And an aside: d) Some of the Lyme / Babesia issues have resolved as a result of treatment by the lovely Dr. M. in Vancouver, which had been causing famishment; boy I'm glad that's over xxxxxxxxx (those are crossed fingers, a la Sarah)]
The Lyrica gives me such physical relief: c) has stopped.
I'm no longer escalating to vomiting involvement with seizures: b) has stopped.
I think c) and a) are pretty much the same: a) has stopped.
Now, I've only been on a week, so let's see in a week or 2 if I'm still singing the same tune.
Nancy, and Frak: I did experience some swelling as I increased the dose. I do believe I am a little more "swelled" generally than before.
quote:Originally posted by Lymetoo: .........neuros are worthless.
Sorry to hear it's the same in the US. Somehow I suspect there are a couple in the US who are worth their weight in gold? I think Dr. S. works with one neuro? And there is the neuropsychiatrist (does that count?) who is ILADS LLMD in NYC.
I had the most patronizing appointments with neurologists; it's shocking and appalling how I was neglected.
With best wishes to all,
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quote:Before I go on, Ro: What is your son taking to control his seizures? How and who diagnosed him, and how long did it take before the events were recognized as seizures?
We have had him on several anti-epileptic drugs and none helped control his seizures. None that we tried anyway. We eventually stopped trying when he had a really bad reaction to Tegretol. (Bone marrow suppression that almost killed him).
His liver never did tolerate the meds very well either. He was too young for meds like Neurontin so we never did try that. It is on the list to try here soon if he needs it. So what made him better?
Several things. First and foremost is treatment for Lyme and Bart. He has both and we are still treating. We think the major culprit is the Bart. We go slow with the meds and when the seizures get going too strong or his liver gets too stressed...we back off a tad with the antibiotics. Septra seems to help the best.
Next... we avoid as much MSG and aspartame as we possibly can. These are big triggers for him. We also have him on magnesium and other supplements. (C, B complex, E, omega 3's, milk thistle, ect)
One thing that really seemed to help quite a bit is quercetin. I am very hopeful after seeing the improvement that he has already made. He still has a long way to go though.
Who diagnosed him? First it was the ER when we went in after the first seizure. I saw it happen and knew what it was. I insisted that they do an EEG right there and then and it actually caught the activity.
That first day he had 4.. the next 10.. then it snowballed from there.
We then went to several neuros, geneticists, and endo's and they all saw it. He also had several EEG's done. Some showed seizure activity... some didn't.
He is 13 years old.
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Oh my goodness, Ro. I am wishing / sending him love and happiness.
I don't know whether Pregabalin has been tested / is being tested for safety in young people, but the efficacy, as Nancy points out and as she and I both have experienced first hand, is far greater than Neurontin. I wouldn't go near the stuff again. It had little effect, and the side effects are significant.
As I mentioned, but as my posts have been long, I will restate it here: I could tell some difference after the first dose, and the side effects are comparatively minimal. At least in a small adult.
I should mention, my body wanted the stuff immediately. It said, "More, more". So I listened. It turns out that Pfizer did a study where the mean dosage is 215mg / day to control partial seizures. I found what I wanted at 225mg. Body knows
Oh and...I had told the rep. at Pfizer before she found the study in her database that I had noticed change by day 2. That night, I had the vomiting and diarrhea, but there wasn't the usual burning pain and muscle pulling tension. Guess what: The participants in the study "noticed an effect on day 2".
With best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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quote:Oh my goodness, Ro. I am wishing / sending him love and happiness.
Thank you very much.. he will appreciate it as I know I do.
I've also just checked and as far as I can see.. Lyrica is only for those 18 and over.
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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posted
This is great news!!! Kudos to you for hanging in there, and doing the big traveling to get the help you've needed.
Posts: 13171 | From San Francisco | Registered: May 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Well, just to bring the powers of Lyrica down to earth, I was up vomiting with diarrhea at 3 this AM.
Now mind you, there wasn't muscle cramping and vertigo to speak of, but there were some weird "images" in my mind before the "event". Also, it's been a week since the last vomiting episode, and there have been maybe three occasions over the past 4 years where I have gone a week without vomiting.
I did so much yesterday; as Robin said to me, it's the feeling of new found freedom: which is such a relief.
I'm going to see if I modify my behaviour, and put more limits on, whether the vomiting can be further curtailed. I feel a lot more clear headed this AM than how I normally feel after that kind of throwing up, etc. than I previous to Lyrica.
So I'll update how it's going with my new "sea legs" for those who are interested.
With best wishes and fingers crossed,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
quote:Originally posted by BJG: I believe it is important to monitor your Liver enzymes while on Lyrica.
Thank you for reminding me.
So far today, my carriage is still a carriage, despite the short foray to the pumpkin patch at 3AM.
I'll post again soon. Thank goodness for the intelligence, motivation and compassion of ILADS MDs and supporting / founding members.
With best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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bettyg
Unregistered
posted
brave, i'm so excited for your good news this week, and what you did as well.
it beat my unexpected bad news on tuesday saying i have early diabetes retinopathy...beginning of losing my eyesight or blindness! so i've got more research to do, and getting my blood sugar down there for good.
again, glad someone got good news this week! YOU DESERVE IT WITH all those seisures.
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Bicillin injection: barely felt it.
Handwriting: able to write "normally" for a while today
More assertive with health care worker today. Was hard to be assertive when I was easily confused most of the time.
With many blessings for us to be well and happy,
CBL.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi All,
Thought I would give you an update:
It's been a bit of a roller coaster, figuring out what I can and cannot do. Before it was "easy": relinquish control; let go of expectations. This is like being a rat in a maze that if I do the unwanted action, gets an electric shock.
But at least I have choice, and practice makes perfect.
I would say that I can foresee myself being up to 1/4 functionality, which as for most of you, is also like 1/2 functionality for one "normal" person, so that's OK!
Went to see a neurologist yesterday. This is neurologist #3. This neurologist just came back from working in the US, and his attitude is better than many doctors I've encountered in Canada.
So we'll see where it goes. I'm booked in a week for a sleep-deprived EEG, and later for an in-hospital EEG, where the staff monitors you for days? a week? in the hospital, takes you off your anti-convulsant meds (slowly), until the staff record an event(s).
I'll keep you up to date.
With best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi All,
I am now running at approx. 50% (with some sputtering).And...
Today is day 8! that I haven't had a significant event with vomiting. As I mentioned at the top, it was 3 times a week for four years!
I've added Thai massage to my regime.
Thank you guys!!!!
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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brave, i'm so excited for your good news this week, and what you did as well.
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