Went to my NL today and of course another round on the Chiari merry-go-round! He wants me to taper off of the Amitriptyline and start taking 75mg of the herb Butterbur petadolex, continue the 100 mg of Topomax twice a day and add gabapentin 300mg, and then start Botox injections...to try to get rid of my migraine HA's. Even with numbness getting worse in both hands, and legs...all symptoms getting worse btw! I told him that the eye Dr. was concerned about the pressure in my eyes so I saw her for my 1 mo. yesterday and she is sending me to a surgeon for retinal detachment and glaucoma (which is normally hereditary in nature..but doesn't run on either side of my family.) Is it the Chiari or the water from Camp LeJeune? Or a combination thereof? I guess he was hoping that the previous injection and meds would be a miracle cure and stop my Chiari from giving me migraine HA's. He used to work at the Mayo clinic..I had such hopes for him...neway, Has anyone tried these meds and found them helpful? Harmful? Or like all the other things that have been tried on me b4 no change whatsoever? My NL almost acts sometimes like I'm crazy that I have more than 15 severe Migraine HA's a year! Seriously! Sometimes I feel as though I need to hold his hand and tell him "It's okay hon' I understand that your a little overwhelmed with me and all of my health issues", not that it would do me any good. Do I need to remind him that I have Chiari? Seriously?!?! I shouldn't have to, but am beginning to wonder if I need to remind him at every appointment. I don't think he believes it's the Chiari causing my HA's I think we are playing...rule out every migraine option there is now to include herbs just to keep from treating the root of the problem! What do I do..Keep hoping I hear something back from the disc's I sent off! I'm a little concerned about the side effects of it and the Neurontin (gabapentin) 300mg he's wanting to put me on. So many side effects...so little time! Lol! I know I'm kinda jumping but I'm concerned about all the meds and then having to see the eye surgeon Monday afternoon! Any help or advice would be appreciated! Still waiting on my appointment with the rheumatologist and I see the orthopedic Thursday after fighting for a almost year trying to get switched over to him because my reg orthopedic is out due to cancer! I live at Dr.'s office's! Will update as I can! Thanks for your help! :)
I have been through 3 sets of Botox injections so far. I find they do help with the pain of the HA but do not help with the pressure I feel everyday. I have tried all the meds they are putting you on with no luck. The Botox has been the only thing so far that has helped make things a little more bearable.If I can answer any other questions please don't be afraid to ask.
Thanks sweetie! I have had no relief from the HA's with anything we've tried and I think I am frustrating my NL! Lol! He has NO idea! I just want to have a little relief...My little man all he has ever known is mommy being not only disabled but mommy has Chiari and will tip over at the drop of a hat! When I start haveing one of my gazillion vertigo spells of the day he will take my face and say "just focus on me mom, it'll be gone in a sec." My sweet baby knows I have to find something and focus on it and there is nothing better to me in the world than his beautiful sweet face! :) How did the Butterbur stuff and the Neurotin do? did you have any side effects? were you taking the Topomax at the same time? Sorry I am just on so many other meds already for other conditions, Ive already checked and there are no interactions or effects that any of these will have on each other! my mom taught nursing so she is a huge help with checking meds and how they react with each other but sometimes it helps to know how someone who actually took them did!
My doctor put me on Neurontin and after about 2 weeks I can say it has helped a little. I consider anything that put my pain level for my headaches under a level 5 good! I know it is just a small step, but so far I will take whatever relief I can get!!! Like I said, it did take every bit of two weeks before I saw any difference. It has not helped any other symptoms, just the headaches. I do still have bad ones, but not as often. I hope that helps. Praying you find someone to help relieve your symptoms soon!!
I was not aware u were at Camp LeJeune....I heard there were water issues...goodness...My sister and BIL were there back in the mid '80's I keep asking if they need to be checked,.
I never had botox injections so I am glad u got a reply from someone that has.....and keep in mind the relief will only be temp. as the issue remains...I know as I had surgery for other issues b4 I was dx'd and those strong pain meds did not touch my HA's...so I knew not to take nething, but to find the root cause...which is hard, but u have a dx now, next is finding the right Dr.
Yes I was on topomax for about a month couldn't handle the side effects from it so I came off.Then tried gabapentin had no luck with that came off it about a week later started the Botox injections. U need to know that the botox only last for about 3 months then u have to have the botox injected again. This is not solving the problem it only helps me to get through the day with the pain some what under control until they can figure out what is the problem really is. I was really not sure if this was the way to go but for right now it is helping some of the pain. I have tried many narcotics and over the counter meds with them not helping this was a last resort thing to try. U really need to look into this and talk to ur Dr to see if this is right for u. Without my husband's health plan I would not of tried this cause it is very expensive. I hope u find some relief soon.
Hi Hun !
I have not had the injections, but I do take neurontin, and have been on it for about six years. My only side effects that I have is drowsiness depending on the dose and slight weight gain. It has helped me with the headaches and nerve pain,. Right now I'm on 800mg a day. I know some dont like it.
I tried Butterbur not long ago. You are supposed to take it for a few weeks to a month before you notice results. I ran out and could not afford to buy more. You can purchase it online, too. Amazon is cheaper than the pedadolex website. But eat something after taking it b/c I would burp up this horrible fiery plant taste after! But other than that, no side effects at all! Super safe! And "typical" migraine sufferers report a significant reduction in them.
I was like you, trying all the migraine meds before surgery. I tried amytriptyline, topamax, imitrex, nortriptyline, and so so many others. I'm not trying to discourage you. I just wanted to tell you about the things I've tried pre-op.
Since then, I have had success with Topamax and magnesium. I'm also doing acupuncture and PT. I have to say- acupuncture started helping after the SECOND visit! I have had 3 so far. Now: medicated- I have no pain. Before: medicated- I would have the best at a level 5. Progress! (I'll add that the first day was absolute misery after, but I was warned it would be. And the second day- I fell asleep!)
Y'all are so sweet! Thanks so much! :) tdaniel770 -any relief at this point will be an improvement! :) I hate to hear it takes that long but so very glad you told me! Thank you! I have a ways to go before I'll know if it's gonna help then! :( But that's ok! I have hope! :)
Yes Selma, I was conceived & born there and drank the water when I was a little girl! Our family has had health problems that we've never had before, they really need to be checked by a Dr. regularly! That's where my mom's kidney cancer came from, my sister has had 7 cancers, They've caught all of mine right before the became cancer! I was Blessed! Please tell them to be safe & I will keep them in my thoughts and prayers! :) (((Hugs))))
mommymuffin2- Thanks sweetie, I am not thrilled about doing them at all but until he's willing to listen or I can get past all my other surgeries I don't know when I'll be able to find anyone willing to even try to take a look at me. :(
Mazie1209- Wow! 800! I could care less about weight gain if iti helps a little! :) I am in so much pain with my head, the pressure!!! Thanks so much sweetie! I am so happy to hear from you!!! (((Hugs)))
RheaAnn- Hey sweetie!!! Thanks, Yeah I looked up the info and was amazed at the cost! I guess they figure people with migraines will pay anything to try and stop the pain! my thing is I know it's not just migraines and am unwilling to pay for another med I know isn't going to work! I am already paying co-pay's on all my prescription meds! I am so with you on your statement "typical" migraine sufferers! we are far from "typical" aren't we! Lol!
Y'll have no idea how much I needed y'all the last few days and I will post a journal explaining some of the other stuff I'm going through..for those of you that know about my mom, she's fine other than being tired and hurting and now worrying about me. My search for a Chiari specialist is having to be put on hold for a little while as I will explain in my journal when I can get my emotions under control. Suffice it to say you have all made me smile and have helped me so much! Thank you! I will keep you posted! ((((Hugs))))
My NL put me on venlafaxine and I have to say it really helped a lot. It took awhile but well worth the wait. Gabapentin is good for nerve related pain so it might be good to take for other related problems your having that may ramp up your HA. magnesium would be good to add to your diet. They are finding more and more people without enough in there system, might want to ask your regular doctor and have lab tests.
I also found my HA/migraines correlated with my CFS flow. When it wasn't flowing as well it spurred on a migraine. I also noticed adding strong scents would also flare it up. perfumes and flowers were the worst for me.
Good luck in all your trial and error to find what works for you. Its frustrating but just keep at it and you will find what works.
OMG! I have HUGE fragrance issues!!!! My regular Doc monitor's everything as he is well aware of the Camp LeJeune issue and he is the one who found my Chiari! He is EXTREMELY thorough! I have so many health issues he is trying to make sure he gets me to someone that knows how to treat them all but it's hard to do in small towns in Bama! I also have a severe neck compression that cuts of spinal fluid flow and creates even more issues! Along with the same issues in my LB! No one around here will touch me! They want to treat with meds. :( I understand and do NOT want amateurs who know nothing about Chiari and all my other issues cutting on me! That's for sure! I have so many vits and meds I'm my own walking pharmacy! Lol!I wish I could get more MRI's and the Cine flow study done...Thanks so much for your encouraging words sweetie! I will be praying for you! I know how frustrating it is to not be able to go places for fear of running into smelly people! My mom has gone from HA's to HA's and respiratory distress. Mine are just severe HA's! I know people don't understand why I ask them to please not wear the stuff around me and they think I'm joking until they experience what happens when they cause one of my HA's. They don't usually do it twice! :) (((Hugs))) praying for you!!!
I have this issue as well....have for as log as I know...certain perfumes gave me rashes...with my EDS dx and all the issues I found that go with it, I have considered all my scent issues to be from EDS and not from chiari....and since I had my PFD surgery and I still have issues, I figured if it was Chiari it would have gone away or eased up....
The worst is laundry detergents and fabric dryer sheets...and of course deodorant....it is hard to find unscented and so many are the powdery ones and they get me in the back of my throat...ugh
I don't think it's necessarily an EDS thing I would think that even though you've had the PDF surgery there is still some pressure on your brain or effects from when your brain did have all the pressure on it that may have never reverted back and that's why you still have fragrance sensitivity issues. I was told by my GP that it could be from the pressure from my brain as it can effect the optical nerve adversely it can also effect other nerves as well that won't necessarily go back to "normal" after having the surgery because permanent damage can be caused to those nerves as well. Wish he was a specialist as he knows a lot about Chiari and how it effects the body! :) I totally understand on the deodorant and laundry and fabric softener! Pinesol and cleaning products anything that has a fragrance! I can tolerate a few things but not many! and NONE if I have a HA!!!
Some of the reading I have done on EDS it includes allergies to things u were able to use, and now can not...and that is how many of the scent issues have been...so that is y I lean toward it being EDS, I could be totally wrong...but since I had issues with allergies to meds like this , and was told it was an EDS thing that the scent was as well.
Oh I hear u, some days r worse then others....lol...and like I said no candle shops...too many diff scents all at once...
I am hoping that my app with the rheumatologist when I get it will help answer these questions...if he knows about it. I will deff ask him to test for it! I have always been double jointed! Even had an orthopedic specialist tell me(when I was a little girl) that if I couldn't find an honest job I could always work in the circus sideshow. Not what a little girl wants to hear let me tell you!
He had every doctor in that place come look at me, tell me to show them what I could do then say "oh don't do that"! Lol! I know I'm funny but looks aren't everything! Lol!
I will! my GP wants me to see him because the arthritis in my hands is getting really bad and he is hoping also that maybe he will test for EDS also!
My GP is great he told us the other day..my whole family sees him as he is a friend also...He said he'd never seen a family with so many Major health problems!
I will let you know more when I have an appt and what he says, I'm going to ask him to test me or to find someone that can!
No they don't think sometimes! I know he may have been trying to be funny but not that way! Lol!
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