Ok, I've been trying it seems like one med after another and my system rejects most for whatever reason. Just went through another spell with Topamax, didn't go well at all, now I'm officially not taking it any longer either.
Valium seems to be the only med that they can find my system doesn't reject. Of course I don't like the idea of that one so I don't take nearly as much as they prescribe. 2.5 pills a day prescribed I might take that in 2 weeks or so. But I need to do something so I've been doing what Quacks [People who glorify themselves with peices of expensive paper they hang on the wall to say they are smarter than you and then spend their life guessing rather than knowing] hate the most... I've been reading up on natural ways to try and help control some the axiety that chiari brings on in hopes that controling this will enable me to function at a higher level.
What I've found and have been reading about is GABA and HTP-5. Has anyone here tried using these? And if so, being as the issues with Chiari come and go, do they actually help with the CM related axiety?
What is GABA?...do u mean gabapentin?...if so, I took that a few yrs ago and I had side effects that affected my IBS....and from what others reported it works great at first, but wears off or u get accustomed to it....
Not sure what the HTP-5 is....interested in hearing about it.
No, I have been down the gabapentin trail a few times. It didn't like me too well either time.
Gaba is an amino acid that some claim helps to reduce or relive anxiety and also helps to relax muscle tissue. HTP-5 is also an amino acid that some claim helps your body to produce seritonion. Used together they supposedly work very well to reduce the effects of axiety disorders. My question is since our issue has the same effects as an axiety disorder would this also help? Or would it be like the anxiety meds, not effective because even though the effects on our bodies are the same the cause is different? I don't know... Was just curious if others here have tried taking.
Yeah, not sure if docs right or not but my nose bleeds were blamed on the top
Whatever, didn't like it anyway although it did seem to lighten the HAs. And frankly the seizures that it was supposed to be taken for, it made them worse. Even with the HAs I feel better now than I did on it. Meds just don't like my system for some reason.
Well I have been having HA's again for the past month or so, and they have been increasing and I think I finally figured it out....
Remember I said I had symptoms of vitamin D toxicity....well that can happen with low levels of magnesium...so I figured that was the problem and have a RX for lab work and know I will soon know the answer....well, I looked up symptoms for low levels of magnesium and found not only the twitch at my eye that is getting to me, but my nausea, and the HA's can all be from this....so off for my blood work and some magnesium supplements.
From what I remember it can affect anxiety as well.....
SIGNS OF MAGNESIUM DEFICIENCY
The classic physical signs of low magnesium are:1 2 3
Irritability and anxiety
Impaired memory and cognitive function
Anorexia or loss of appetite
Nausea and vomiting
Actually if my memory serves correctly, Magnesium works in uninson with these amino acids. I also have a deficency there, not sure that it's connected but potassium also runs low no matter how I eat.
Funny how we can wire up a building with copper and have all function well for years. Yet for the human body we need all these different chemical elements in balance. Too bad we can't just go reset a breaker and have all function correctly! Instead we get meds shoved at us out the wazoo; meds that alter that intricate balance and send us bonkers.
Anti-Depresants for example, here take this! Oh wow the side effects are that it can make you more depressed even to the point of suicide. A little research shows that many of them work by stimulating your body to release it's backup quanities of the imbalanced chemicals so we feel better. Sounds good, but our body is out of balance because of other deficencies that cause us to not produce enough of those chemicals. Thus after a time we crash as the meds completely deplete the chemicals and now our electrical system is shorted out.
I really think that is one of the biggest problems I have is that most of my younger years were spent with Mom trying to get me help. So it was this doctor then that one, this med and that one and by the time I was in my early to mid teens the meds no longer worked. Pain meds were like candy, have no effect. Then what really finished things off was around age 27 while hospitalized the doc put me on some sort of automatic pain machine. It gave me morphine at a set time frame didn't matter if I wanted it or not. Turns out perhaps the doseage was fine, but it wasn't fine for me! They OD'd me on morphine in the stinking hospital. To this day have problems that started with that.
Oh well, I best shut up. Too many docs too much distrust after too many incidents of God complexed homosapiens. It would be nice to find a well experienced, educated Doctor who was in it because he/she cared not because of the paycheck.
ON my mind right now as things have been pretty rough lately. Last night topped it off to the point were.. dunno may go back to CCF. Just hate the idea of driving all the way out there just have someone hand me a bill I can't pay and say "well everytihng looks fine" Yet, I just scared the living pellets out of my wife and family. Had a very intense HA, probably the worst since pre-op so I was laying on the couch. Family was watching TV I was just laying here wishing it would calm down. Then out of the blue I sat up to go get a drink and when I sat up just started choking, couldn't breath at all it went on for what seemed forever. Was bad enough I felt like this was it. Well, it finally calmed down and of course made the HA 100 times worse. But I see my youngest son sitting across the room just petrified, oldest son was running around doing I don't know what and my wife is standing by me telling him to calm down and go get the phone..... It was a bad situation all the way around. So guess there is no choice anymore gotta find another doctor but I can't help but wonder if some of these aminios and such are not out of balance and causing some of this stuff.
OH well alls well that ends well right? I best go see if my pillow likes me before my eyes get too wide awake again.
No worries either sis, I'm fine really, just don't like the feeling that I just scared the dickens out of my family and can't do anything about it. I'm normally the one who trys to fix everything or at least mend it.... and here I am the one causing emotional unrest with my family. :-( I know, not my fault but it still bugs me and I know many of you on here can unfortunately most likely relate.
Hey Bro....I know what u mean and my eyes widened as I read that so I was scared with them even if it was after the fact...yikes...
My DD is sooooo over protective with me as well...I could have gone to Pittsburgh with my sister this weekend, but DH and Ray said NO...lol....and they were right as it was a 5 hr trip....but, I wish my DH would just listen to y I want to do something instead of treating me like a child at times....
These HA's I have been getting r so bad, and I believe it is the magnesium....it all seems to fit....y I or how I got so low I am not sure...but I know we were always to keep track of our vitamins D,B12, magnesium and potassium....
Well in taking the D, I had issues that were similar to vit D toxicity and a reason could be low levels of magnesium.....
These HA's r keeping me up at night....get worse in a car....and I am so very tired right now bcuz the lack of sleep...
I am waiting on DH to take me to the lab for blood work to see where my levels r....then I hope to get supplements to correct this....
I was feeling soooo much better once I started the probiotics, now I have this going on.....
I know ur insurance is what dictates who u see and where u can go, but have u called around to ask ne of the chiari drs if they would work with u?
CW- the only other option is not upsetting ur family by how u r doing and that is far worse, bcuz right now u know they r upset bcuz they love u <3
CW, thanks for starting this tread, this is a subject I have been thinking about a lot lately .I have been on Lyrica for some time, it was prescribed for pain but has never worked for me, in fact it makes my dizziness much worse (dizzyness is listed as one of the possible side effects) I also noticed I was getting anixity attacks when I started taking it so the Dr's suggested Ativan to help with the dizzyness and feelings of anixity despite the fact it was noted in my medical chart that I developed a dependency to this drug during a stay in hospital some years ago. This would mean I was taking a drug to counteract the side-effects of the Lyrica. I asked myself what will they give me to counteract the side-affects of Ativan. I avoid using drugs as much as possible and would love to find out more about alternative treatments so if anyone has any suggestions or experience of alternative treatments it would be nice to know about them.
Selma, I am glad you listened to the "voice of reason" as you put it lol and did not put yourself through the torture of undertaking that journey, I hope you enjoy your visit with your DD and her DH :)
Hey Buddy! Long time, my fault not yours, but good to read your words again.
Anyway, with most things in life I've leaned towards alternative treaments just because that is where life has left my trust. During my early teens I had a very good health, phys-ed, wrestling coach all one guy. He took an interest in my and helped to understand how pain effects our bodies and to get off the pain meds. My parents at the time were tied to the Doctors every whim, don't blame them they were just doing what they thought best. But since that time I take the meds when I have to do so... however most times [pre-chiari] much research usually results in alternatives that offer help.
With the CM and AC... it has been much more difficult. However, I can't say this difinatively yet as it's only been a short time. But I'm taking magnesium, potassium, GABA and 5-HTP. I sleep at night! Haven't done that in some time, I mean really sleeep and have been waking refreshed. HAs not gone, but much reduced. In fact I've not had a bad one all week this week. Concentration, too early to tell here but I do think it is improving.
For me the biggest thing I've noticed that I can not deny is that much of the shaking I get in my hands nearly stopped. I get it normally when trying to concentrate to do some of my more detailed hobby things, but will it last? Is it because of the supplements? I don't know. The seizures, unfortunately I see no change at this point though some of my research on these supplements kind of makes me think the Dr was wrong there. I tend to wonder if they are not from the AC rather than CM.
Anyway, don't want to get too much off topic here and have sis need to slap me around. :-)
Am working on the Dr thing... Promised my wife that if some things were not more normal by this Friday we'll do something. First on the agenda since I can't seem to get anywere talking to them, she knows to just take me the er at a certian clinic. This is what my previous Dr had told us to do if we had to have help right away. So perhaps that will get us the appointment. For now though, I have a few days left to try the supplements and if there is real improvement that 'she' can see then we're going to postpone for a little while and see what happens. But if there is another ephisode like before I already know it's 'shut up, get in the car, you are going'. :-) No choice there. My wife told me "pay em $10 a month for life" she said that's better than no life or worse problems. She is correct... so we'll see what happens. Paying for the c.i.n.e. is what scares me though well and the PET scan, last time they checked on the AC I had to go back 5 days in a row and rerun the PET scan. Had full coverage then but still a motel room for 6 days plus the cost of the scans.... ouch! Motels don't take payments either!
Oh well, feeling good today, we'll see if we can keep it that way.
I have not seen a doc since 2003 for my Chiari and am very sensative to synthetic meds. I have been taking supplements to manage my symptoms.
You all are very right about hte magnesium it makes a big difference.
I don't know if you are on a CPAP, I found out most of my anxiety was caused by that. I have also learned that most of my pain was caused by too much acid in my system and inflammation. I discovered Curcumin(turneric+) this stuff is amazing for reducing inflamation and I just learned it has been scientifically proven to stop the growth of tumors. Kava Kava is amazing and works as well as Xanax, but you can't take it all the time because they say it can damage your liver and kidneys...I have been taking it for years and have not experienced that but there is also Valarien root and Willow which you can take daily. Also 1000 mg vit C am & pm helps with stress and Niacin(non flush, time released 500mg) I also take fish oil and other stuff. Its alot of work but research for yourself...5 HTP did not do much for me. A good high quality protien supplement(prferably drink) should give you all the aminos. Good luck and good days.
Hey Bro....I am sooooooo glad ur DW has laid down the law...lol...and u know who is the boss...haha
But, it is really the best way to handle this...I understand financial issues holding u back....I have concerns in that area myself.When u travel to go for MRI's and see the Drs don't they have a location for u to stay at reduced rates?...Many of the Chiari clinics do....so, ask...u never know.
Glad u r having a good day...I pray it continues for u : )
I forgot something very important...MILK THISTLE! Whether you take natural or synthetic meds they build up in you liver and make it sluggish. Milk Thistle cleans out your liver, and you should take it before bed because your liver dumps at night.Vitamin C and Lemon juice also help keep your liver clean.
Sis, he's back home again. Trying to earn some cash so he can go back. Although right now he's talking to the contractors union I guess they are going to accept an application from him. We'll see what happens there
As for DW, we are on the same page, she is just my saftey net. So I can't talk myself out of it when it's time. Right now.... dunno but things are a bit better so we'll see. Frankly, no, I don't expect this to 'fix' anything. But I am hopefull that it can at least give the same compensation as the meds were supposed to do. We'll see...
Any more cake decorations? Make the ones I can eat!!! Of course you must use diabetic sugar :-) You know the kind the Donut shop uses!
Hey Bro.....just glad u r both on the same page.....that is great!
And I am glad things r better.....u had me concerned.
We all need a safety net....mine is DH....sometimes he can be too over protective...I can feel smothered...but, I know he cares : )
He's home?...how come?...how did he get home, did he take a bus?.....
U didn't drive back up there did u?
No...I was back at my parents...we r now facing a suit from the dang contractors...can u believe it....so, I just have not gotten back to my icing project....
Diabetic sugar huh?...we'll see what we can do....lol...
Come on sis, you have to go along with me or my fam may not buy it! I just ummm .... convience her [yeah right] every now and then that the donut shop uses Diabetic Sugar on certian days which of course means that I can eat the donuts!!!!!
Sorry sis, your parents have been through enough the way it sounds! Contrators, Lawyers and Doctors.... they all go to the same 'professional practicers school'.
No, much better, not out of the woods but wife and I have decided to start looking for a DR but not going just yet. Want one in line just in case but are looking into cost CCF vs. any other reasonalbly close drs. I'm convienced the NY drives are what got me in this shape. No more drives like that in the near future for me... not worth it.
CW P.S. Diabetic sugar, chocolate, soda .... you know now come on!
I have tried taking cod liver oil with Vitamin D as I read in a book on Chiari that this could help chronic pain. It didn't really help the pain but it made my hair a lot silkier lol..
Ray- I'm sorry to hear that the Lyrica isn't helping you. Can I ask how much you are taking? For a long time I was only taking 75mg a day and I was in the same boat, I felt like it wasn't doing any good but that is all I could manage as I am also very sensitive to meds. Then my Physiatrist mentioned trying to take 25mg several times a day. I did this for months and managed to raise my tolerance and now I take 250mg a day with very little side affects. However, anxiety wasn't one of mine to begin with--Gabapentin did that to me though. I once read on a fibromyalgia website (facing facts that my pain is A LOT like FM- I just know the cause of it) and the site said that you have to be taking over 200mg for it really to do any good. I found this to be true, once I got over that amount I have seen improvements- it's not a cure but it's made life tolerable most of the time.
I was just the same as you guys in the fact that I really didn't want to be putting any drug in my body (not to mention the huge COST) but I really do feel that I have found something that works.
I pray that you guys find some kind of relief too...it's nice to talk to everyone again...I hope you are all doing well <3
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