canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi,
I'm not a happy camper, but I had to do something...
As some of you know, I was a patient of the neurologist Dr. W., who was killed by a drunk driver last year. I've been without a neurologist since, and two days ago, I saw a new one.
She was competent, and I think she'll get to the bottom of what is going on. She started me on Topomax, and after my second dose, I'm developing anxiety and I'm irritable and a bit p*$$ed -- I started on the 12.5mg dose.
I hate these drugs that effect one's mood. I think it's such a bad idea to take these things, but I have to do something to stop the vomiting...maybe I should cut the dose in HALF of even that to start??
In your experience, will this anxiety go away, or get worse?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
You should start lower than that and take the sprinkles which are in a capsule. Be careful, if you get off this drug too fast it can cause a gran mal seizure.
It can stop migraines but it will also decrease your appetite and make some things taste metallic.
I used it for a year when my migraines were constant. I finally got off of it as it was tearing up my stomach and making me have a very bad temper.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Have you tried meclizine or even valium for the nausea?? Meclizine is used for vertigo. I wonder if it would work for you?
Did you try Zofran?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Oof, Faithful, I got a taste of the temper this evening; I didn't exercise it, but OMG I could feel it, and it was horribly out of character. I can tell you right now I'd rather vomit than live like that for any extended period. Did your mood return to normal when you discontinued the medication? That's my biggest concern with these things; that one takes it, and it causes a permanent shift in brain chemistry � and not for the better
The worst of it lasted a few hours. I asked for the sprinkles, but the pharmacist made some remark that was intended to obfuscate and I dropped it. Faithful, do you think it's worth trying a lower dose (1/4 pill / 6.25mg), and building up from there to see whether I still get the mood side effect, or have you heard from others if one is effected in this way, that is what to expect no matter how one tirates it?
TuTu: Zofran was a laugh in terms of how CONSTIPATING it was, but what got me to quit was, again, anxiety. Sigh.
Haven't tried Meclizine. Will look into it Thanks for the suggestion
Best,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I just remember I had " dumb" brain. Couldn't carry more than one thought in my head. People would ask if there was something wrong with me.....
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I hated that drug. It's the "go to" for so many neurologists that are lost for a diagnosis. I never get headaches (only symptom I don't get) and Topomax made my brain buzz and gave me migraines.
I know Benzo's are bad but Lymetoo has a point. Maybe very low dose valium.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It can damage the liver and cause kidney stones. To top that, these kinds of drugs certainly do affect mood and that affects the whole body, mind, spirit, relationships, etc.
IMO, any drug that causes anxiety is never worth that risk. Been there, done that, nearly did not survive. Never again. By a drug causing anxiety, that action in the body is upsetting so many functions and that's usually never a good thing.
IMO, such side effects are a clear warning sign.
Even if to control seizures (assuming that's the reason for this Rx), there are far safer ways to address that matter, starting with likely deficiencies, &/or supplements that calm overactive NMDA and support GABA.
If using for "off label" reasons, there are also other safer and more pleasant approaches, I'm sure of it, no matter what.
Anxiety is a terrible side effect, anytime. And it often is a sign of liver / kidney stress, never a good thing. It is also likely stressing the adrenal system, it can't help but do so.
Of course, never increase or decrease sharply or suddenly any psychotropic drug without medical supervision.
You have likely already cross-searched for side-effects. If not, just starting with Wik & Livestrong:
[ 04-06-2013, 04:56 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Most drugs are not tested with the rigor that we think. I saw this lecture on Book TV a few weeks ago - it speaks to that reality and to the wide-spread FRAUD in hiding side-effects and whole studies that don't turn out the way the industry wanted.
These tend to be more for psychotropic drugs and drugs that treat symptoms -- drugs that treat infection were not highlighted in the lecture (though they may be in the book).
"BAD PHARMA: How Drug Companies Mislead Doctors and Harm Patients"
Ben Goldacre, a medical doctor, wrote the "Bad Science" column for the Guardian (UK) from 2003 to 2011. His book, "Bad Science," has sold over 400,000 copies and has been published in 18 countries.
Ben Goldacre talks about the influence of the pharmaceutical industry in the global healthcare system and argues that pharmaceutical companies hide negative studies and use questionable testing and intensive lobbying to get what they want, regardless of whether the drugs they produce are good for patients.
Mr. Goldacre spoke about his book at Town Hall Seattle.
Aired on BOOK-TV Sunday, March 3rd at 7pm (ET) -- you can watch this presentation on line now, see the video link to the right of page
[ 04-06-2013, 04:58 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry that last post "went wide" -- I've found that "tiny url" links can disappear after some time so won't be accurate if someone wants this down the road.
To see the full post, just stretch the side of the page to the right. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: Best way to control limbic seizures / overactivity?
Many LINKS - also helpful for migraine relief. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thanks, Guys, and special thanks, Keebler, for that link to Berberine, etc.
I woke up this AM in a BAD mood. And a bit stupid - a worse version of the Lyme disease, "what was it I was just about to say??"
And that was after only two doses. I am not going to continue. For the moment anyway.
I forgot to mention that I've tried Ativan (that's valium, right?). That didn't do anything.
The only thing I've tried that consistently helps with these neurological whatever they are's, that doesn't have awful side effects, seems to be Tylenol � ALOT of Tylenol, which my natural practitioner friends warn me against taking, as it can damage the liver...
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
I tried topomax for my migraines and I became suicidal. After a close call at the er I stopped taking it and still don't have anything that works for my migraines
-------------------- Take It Easy, Peace Posts: 59 | From Old Lyme | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sadly, acetaminophen (tylenol) blocks glutathione in our entire body, and can create a lot of trouble the may sneak up on us (including liver, lung and hearing damage).
"A LOT" can be fatal. Even a "normal" dose, over time can contribute to death in some instances. The blockage of glutathione in the body can cause serious ramifications. Some detail:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
---------------------
As you say you've tried everything, I wonder, then if maybe a different form or brand of these might be tried if the kind you are taking is not doing the job (assuming these have been on your list as they are key to helping with all kinds of neuro relief):
CORYDALIS (maybe the formula you've tried is not the right one for you. There are a few different ones).
MAGNESIUM (up to 1,000 - 2,000 mg in divided dose, balanced with calcium and other minerals, too)
TAURINE
LITHIUM OROTATE
FISH (or KRILL) OIL (Maybe OmegaBrite will work better) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As you are likely free of all food additives and, if you live in Candada I assume they just sell less junk in prepared foods (?) . . . still, might something be creeping in?
Assuming you are gluten-free (as that helps so much to lessen all kinds of pain) . . . see the "Hidden" links here as that can slip in even in lip balm - or if you are in a place with wheat flour "flyiong around"
Any new bedding, foams, textiles or vinyls in your life (chemical coatings can clobber us)?
I think these are all discussed here: Magnesium, Corydalis, Taurine, Lithium Orotate, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Lamictal might be a better med for you but start very very low (1.25mg and stay on each level of dose for 1-2 weeks, 2 weeks at first).
You can become attuned to do Reiki on yourself: it takes one day to learn. Tai Chi, massage, tapping/EFT, energy medicine in general can really help. I find affordable classes, if that is an issue. And community acupuncture is also affordable.
Posts: 108 | From US | Registered: Apr 2012
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thanks, Pug. This problem is beyond what energy medicine can solve, but as I said, thanks, anyway; your support is appreciated
I've been on Lamictal before, which helped when I had worse symptoms, and didn't cause mood issues. Once I improved from treatment for Lyme et al., I found the Lamictal didn't help this remaining issue. That said, it might be worth another shot.
I left a message for my neuro yesterday, so we'll see what she says.
Keeb � did I say I'd tried everything? I'm sure I haven't, but it sure feels like it!
I know about the Tylenol, but what else to do? I've tried various things with my diet over the years, now I've finally given up, though I stay away from caffeine, and a few other things, and eat a highly healthy diet, which does include some grains � through experimentation, I've learned that whatever is going on is not going to be solved by anything I can control. I mean � dizziness, vomiting, diarrhea � daily if I don't limit my activity; limit my exposure to bright lights, etc. and take Tylenol.
I have a sleep-deprived EEG scheduled for next week � I'm going to ask them to leave the fluorescents on, eat food triggers 3/4h before the test, and hyperventilate like a good girl when they ask me to � do my damnest to have one of these events while I'm on the table. Lets keep our fingers crossed.
In the meanwhile, I'm going for some hormone testing this AM; ULTIMATELY, I'm hoping this will be solved with Cortef and natural Thyroid replacement � certainly, that would be the best case scenario...
Best,
-------------------- 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:Originally posted by canbravelyme: Oof, Faithful, I got a taste of the temper this evening; I didn't exercise it, but OMG I could feel it, and it was horribly out of character. I can tell you right now I'd rather vomit than live like that for any extended period. Did your mood return to normal when you discontinued the medication? That's my biggest concern with these things; that one takes it, and it causes a permanent shift in brain chemistry � and not for the better
The worst of it lasted a few hours. I asked for the sprinkles, but the pharmacist made some remark that was intended to obfuscate and I dropped it. Faithful, do you think it's worth trying a lower dose (1/4 pill / 6.25mg), and building up from there to see whether I still get the mood side effect, or have you heard from others if one is effected in this way, that is what to expect no matter how one tirates it?
TuTu: Zofran was a laugh in terms of how CONSTIPATING it was, but what got me to quit was, again, anxiety. Sigh.
Haven't tried Meclizine. Will look into it Thanks for the suggestion
Best,
Haven't tried Meclizine. Mepron helped with the migraines and I use some supplements that help like B2.
I also use essenstial oils on my forehead and neck when I feel a migraine coming and a lot of the time it takes most of it away and I don't have to take migraine medicine.
Topamax did stop the constant migraines but it wasn't worth the side effects for me. Once you get off, your personality will return. I used to get so mad and it was like a pot starting to boil that I could not stop.
You could titrate up and see if you can tolerate the drug, but the side effects will show up anyway. I was so mean when I was on that drug.
There are other medications your neurologist can suggest but I am hung up on side effects. Seems that I would get them all so I just stopped the migraine preventives and tried to find supplements to help.
I think that my big problem was Babesia and I just wasn't diagnosed yet. The mepron really stopped a lot of the headaches. Thank God! Hate that stuff, but I have to take it.
Antidepressants can sometimes prevent migraines but I never liked how I felt taking them. It was like I was someone else. And, they made me feel depressed and some of them even made me feel suicidal. So no more fooling around with those.
The oils really help me and I use them every day now. If you can find an all natural way to prevent the headaches, try to.
If you search the internet for info on this, you will get a lot of suggestions.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thanks, Faithful. Amitriptyline gave me a suicidal thought, which was so extraordinary for me I stopped right away.
I'm not sure I can handle the Topomax � I woke up after taking my second dose, in a mood to take someone's head off, and I hear from the other room, "there wasn't much milk left, so I saved it for you" (my bf). I thought, "there isn't any room in my life for me turning into a b*tc#; I'm quitting the stuff" � I mean, he's such a sweetie, and so is my dog and so am I � I wasn't acting on my mood, but I imagine that after a while, it would become either impossible for oneself to tolerate the internal feelings, or else start BEING a b*tc# proper. I'd rather barf
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I'm so sorry you are having a bad time of it. Dr. W actually put me on Topomax for mycoclonus, I started at 50 and worked up to 200 mg. I recently went from 200 mg to 100 mg because I'm just trying to cut out any unnecessary meds, and it was fine. I've never noticed any side effects from it.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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