I felt like putting this out there for everyone to discuss. I am seriously considering talking to my multitude of doctors about getting off my medication and attempting to take the 100% natural route with my AVM and then whatever happens happens. I honestly hate the idea of putting all these chemicals and mind altering medications in my system. I have a grade 4 brain avm located at the top of my brain stem that goes through the hypothalamus and basal ganglia. I take nerve blockers for my constant pain, seizure medication that doesn't seem to be helping very much, and an anti-depressant that my regular doctor put me on. Oftentimes I don't feel the effects of these medications for a period of time and then suddenly it feels like it hits me all at once. I hate this feeling and would honestly love to be able to live comfortably without the use of medication. Any thoughts on this?
Daniella, have you gotten an opinion from Spetzler in AZ yet? Before making decisions about long-term management, I would feel better if you had his opinion about the operability of your avm.
I am completely inoperable, I have accepted this and would prefer, even if i could, to never have to get surgery.
Ok, I understand. I hope you get some good input from our members.
When you say the "Natural Route" what do you mean? Are you talking about stopping all western treatment? Are you talking about trying natural or holistic medicine? I would proceed with caution either way and I would seek guidance before stopping any anti-depressants abruptly, this can have very severe side-effects and many times need to be tapered down. Also, natural and holistic medications are not regulated by the FDA and not studied scientifically for effectiveness and/or side-effect so please be very careful. Maybe it would be a good idea to just start over and seek out new doctors if you are not happy with your treatment so far. I wish you luck and health!
I am speaking with my doctors soon to stop all medication that I am currently taking and I do not with to start anything new. When I say natural route, I am meaning using herbal and home remedies. I want to use only things that come directly from the earth, nothing processed or unnatural. This hopefully will include foods as well.
I completely understand! I have made it known to my family that if I'm to suffer a setback, what to do, and what not to do. I told my Dr that I wanted to get off anti-depressants. She finally helped taper me off when I told her she could help, or I was just gonna stop cold turkey. Anti-depressants were more for "them" than for me. I only take my Keppra which is not bad for me and has controlled the seizures.
I can sense your strength through your message. I will pray for you.
Mari
Daniella, you may wish to check out the antiangiogenetic diet: http://www.youtube.com/watch?v=C_5Z31mUmtc
Of course, seek approval from your doctor before making dietary changes.
I know this is not a "natural" solution however .. my son just had a VNS implanted in Dec and is gradually coming off his meds .. it's quite a blessing actually .. he has been thrilled with the "normal feeling" he is experiencing as he eliminates drugs .. he feels "clear" .. I don't think this is what you are looking for but perhaps something to look in to .. I wish you all the best in your search for the right direction
That's terrific news about your son, Terri! Thanks for sharing.
Heygdaniellaco
How old are you. Any kids? Married? If these questions are too personal to answer, please do not answer. I can’t help myself, as I need to know some facts before I comment. I was a paralegal for many years.
If you have family you love and who love you, you would not just want to jump off the medical route and go natural. Investigate, research and know what you are doing. You could help the amount and severity of pain, but you could still need pain meds, too. Please think seriously. If surgery were an option, and in the near future it was a possibility, would you turn it down?
beans
I hear you on the annoyance of taking medications. Every time you put a pill in your mouth it's a reminder of you brain problems. No medications can make the AVM go away. If they invent such a thing one day I'm sure you'd take it (note: I have CM not an AVM, but no meds make that go away either). Your medications just minimize the symptoms caused by the AVM. So if the AVM causes pain, and you stop pain medications, then the pain might come back. If you stop taking the seizure medications the seizures are more likely to happen. Ditto on the AD's.
So I guess it just comes down to a quality of life issue. Do you feel better with the meds or without them? It's not like stopping them will change the course of the basic problem. You probably don't need to go all or none on any of this. If you have good doctors they should be willing to work with you to get the right trade off for symptom relief/side effect/annoyance issues.
I tried the same thing but the pain was unbearable. Maybe you could try to phase out some of the meds and see how you feel.
Joel.
Hi. I guess if you can live with your pain and depression, I'd say try to go without those two, however, I'd be very cautious as to going off the anti-seizure med. No one is going to tell you to go off of that because you may start having seizures.
As with any of these meds, don't forget that you can't just go off them cold turkey, you have to wean off of them, a little at a time. That is important.
Good luck to you and let us know how you make out.
Hi Daniella, my 31 year old son has grade 3 avm between the sensor and motor part of his brain. He doesn't come on this site, but I do get some emails, sometimes and decided to go on when I saw yours. I just happen to be at my chiropractor this a.m. and saw my son across the hallway getting chiropractic (some activator) and then he went and had reiki. He had proton therepy 11 yrs. ago and then 7 yrs ago, we really haven't seen results from that. He is on an anti seizure med now. He takes whole food supplements, does 3 week cleanses, tries to eat well. Having said that, he still likes to go out and have a few drinks with friends. I think a wholistic dr. would advise you to work with your medical docs as far as your meds. are concerned. I don't think anyone has an answer, but it's good to go and investigate. My son said he will do the reiki for a year and see how that goes. (it's actually reiki and another type of energy med this lady does.) Some chiropractors are trained in nutrition - I'd maybe start looking online? Whole food supplements are the way to go, not synthetic - we like a chiropractor in Houston TX - Dr Stuart White - while he can't cure AVM's - he might be a good starting point as far as nutrition - all the best to you
This is important - thank you for putting it up for discussion. I think it is true for anyone with something that means you can’t just coast through life- as I used to do and many days wish I could still do- like my friends. My mom is ill, too, and I know neither of us like all that we have to do every day that was not how we lived before. So some days she does her stuff just for me and some days I do my stuff just for her. Other days we do it for ourselves. That works with our ethics- (I am an ethical humanist) pthat we are each a part of the world with responsibility to ourselves AND the world and people around us. Others are saying smart things, though - like how to make changes safely
This is a really great question, and I’m glad you put it out there.
I believe wholeheartedly in natural medicine, and I’ve seen the benefits of homeopathy, herbal, and naturapathic methods. I also know that those practitioners go through much school & training in order to get to the level of practice where they are. The things these wonderful
practitioners know are not things that we can learn off of Google. If going natural treatment only is a route that you’re seriously considering, I suggest finding yourself a wonderful & qualified Naturopathic practitioner to work with you and also with your current docs as you taper your meds down to nothing. A fabulous naturopathic pracitioner can also hook with up with others, like cranial-sacral therapy, chiroprator, nutrionist, and herbalist. A decision like this doesn’t happen overnight, I don’t think, but is rather a transition of care. Ultimately, it’s your body and your life, and you get to choose and choose wisely. Sending you healing wishes on your journey.
Honestly, it’s your decision, but I’m not too sure I’d be so anxious to go off medication altogether. I know sometimes the negative side effects just suck, but they could be keeping you together. Definitely wouldn’t stop the anti-seizure medications. The more you have, the more often you’ll have them, so it’s best to avoid them altogether. Also, a seizure could kill or seriously handicap you if, for instance, you should have one in a pool or on the stairs. I hate the side effects too, but I think they are much better than the possible consequences of having a seizure in an inopportune place or worsening my condition. Anyway, we put a lot of pathogens and chemicals into our bodies from everything we eat, touch, breathe, maybe a diet change or supplements or something might help better. I would work on adjusting to a new lifestyle on these medications or maybe switching to ones with side effects you can more easily cope with than “going natural.” I honestly think the symptoms you are experiencing aren’t really normal. I would talk to your doctor about switching medications because I don’t have those symptoms nor have ever felt those symptoms on any of the drugs I’ve been on…
hi there it was years before i finally had my avm treated but not out of choice it just wasnt available at first. then i stopped askin for years and no one ever asked me if i wanted treatment. ive never looked back though having it treated regardless of the side effects. be careful stopping anticonvulsants though. the only time i did it when i decided to become pregnant i had a full on seizure. once youre on them its hard to come off them. i know all this seems hard to live with at the moment but your life goes on avm or not.