After all was said and done, I have found the following maintenance medicines to be useful in maintaining my health and controlling symptoms. I take whatever medication I can get in liquid form, in hopes that it will absorb better. With GP, it really is a shot in the dark on if it gets absorbed, when it gets absorbed and how much of it gets absorbed if it is absorbed!
- Lorazepam and Lunesta: I have trouble sleeping sometimes due to pain and anxiety. I don’t swallow the Ambien anymore but rather place it under my tongue and let it sit there until it fully dissolves which takes quite a while. It won’t work otherwise. I do the same thing with Ativan
- Venlafaxine Hydrochloride (Effexor XR): For depression (who isn’t depressed when you have a chronic illness).
- Gas-x: For … gas build-up.
- Maxalt MLT: For intense migraines. Melts on the tongue instantly for quick absorption.
- Oxycodone: For pain associated with migraines and GP (15ml suspension as needed).
- Ketorolac (Toradol): Weaker migraine medicine I use when I don’t have Maxalt available and often combine it with OTC Excedrin Migraine x3.
- IV Ondansetron (Zofran): I take 2x each day via my port for nausea.
- Omeprazole (Prilosec): For Barrett’s Esophagus and the GERD that caused it.
- Flowmax: Using it for side effects of losening the muscles around my bladder to aid in easier emptying (happens when you develop a neurogenic bladder).
- Topiramate (Topamax Oral): Preventative migraine medicine that no longer works for me.
- Sumatriptan (Imitrex IM): Injection I give myself to control a migraine.
- Riboflavin: Also known as B2 can act as a preventative OTC vitamin to help with migraines. Given I’m still having daily migraines after months using it, I’m still not convinced (though I was taking the wrong dose).
- Fioricet: Not a preventative medication but is used to treat a developing migraine. Sometimes it works and sometimes not. It is good to have around because it is non-narcotic
- Relistor Injections: I give them to myself every 48 hours and combined with my Super Clense, it seems to be helping, though I still have nasty stomach problems.
- Metadate CD: A medication I am taking as part of a sleep problem. The hopes are that it helps keep me more awake and active during the day so as to sleep better and on a more normal sleep schedule.
6 Responses
ashley. says...
how do you take your Effexor? I had to change to 75mg bid of the immediate-release through my ND tube. I’d love to get back on the XR because the immediate-release gives me headaches. Just wondering.
Kirby says...
I take 225mg XR pill form in the mornings. I never take it after a certain time because for whatever reason, it will give me RLS during the night. I don’t know how much of it I am absorbing but that’s just how much I’m taking. When I see my doctor next, I think I’ll jump up to 250 or 275mg because lately, the current dose doesn’t seem to be working as well. You could probably take it orally as well. As long as I don’t eat anything or drink more than is necessary to get pills down, they generally stay down. That is, unless I’m sick, then I’m in the hospital. Don’t ever put XR pills through a feeding tube though :S or chew them. I did that with my Lunesta – I sucked on it. Found out it was an XR pill… oops! I will admit, if I want it to kick in faster, I will suck or chew pills. My stomach doesn’t give anything up willingly or in any sort of useful time frame.
Christina says...
Thank you so much for your story. My husband is in your boat he has tried everything and the reglan made him pass out. Not one doctor has suggessted to try a feeding tube. Perhaps because he is not underweight. But he has been in and out of the hospital every week for 2 years. His pain becomes so unbearable that he will start vomiting and not stop until he is getting IV medications at the hospital. You find your pain is managed on 15 oxy’s. My husband is on MS oxycotin and 15 morphine and eventually the pain grows so bad they dont cut it. I think the problem lies with his eating habits. He will eat what he wants and then the food sits there until it starts to rot then he vomits. Any tips on how I can help him understand that his food choices can cause his pain? I want him to do supplements and liquids, but he was such a meat and potatoes man that this lifestyle is torture. Yet so is living in a hospital. Thank you
Kirby says...
My pain isn’t managed on 15ml of oxycodone but rather dealt with on 15ml of oxycodone. The pain at times is unbearable but for as many times as I complain about the excruciating pain, being in the hospital that many times would be worse. I need to learn to live with it. I will be seeing my pain specialist soon and hope he has some other options for me. All of my doctors hate that I’m on narcotics for pain but I’ve tried all the non-narcotics and they either flat out don’t work or they cause serious allergic reactions forcing me to go to the ER. So they either need to find the source of my pain or accept that medicine like oxycodone, will be part of my life. I only worry about starting a family on these medications. So I’m starting to lower them and get off them even though the pain they help control is most definitely not getting better…
Jacquelyn says...
How much Ativan do you generally take in a day? Is it a prn medication? Have you ever had Alprazolam *Xanax* and how many mgs of Topiramate do you use daily? Does it help with your seizures at all?
Kirby says...
I had the full dose of Topamax and it worked for about 6 months before it stopped working and that was when I still had my J-tube (a year and a half ago). They didn’t help with my seizures. I’m on 2mg tablets x2 every evening and I let it dissolve in my mouth. I don’t think I have tried Xanax. I will be going in-patient on Monday as they do an VEEG (Video-EEG) for an unknown length of time. Right now I have access to supplemental oxygen and IV Benedryl (got it from the pharmacy before my doctor cancelled it…) and hope it will last me long enough to get it re-prescribed once they see things while in patient. I’m nervous about what they are going to do. They think it is medication related and I strongly disagree. I am afraid they will take away all my medication (pain and otherwise), and see if I have a seizure. I don’t see this stay as being at all comfortable but full of pain and lots of frustration from doctors who just won’t listen and trust me.