Living with Gastroparesis

So I see Dr. Justin Stahl with Virginia Mason Medical Center, Seattle for the treatment of my migraines that recently have plagued me everyday. First, he placed me on a preventative medication since I was already tried on Ketorolac, and Maxalt. This new medication was called Desipramine HCL. I started off on 50mg each night. It seemed to initiate migraines at night so I cut it in half and still suffered major migraines until I was down to 15mg each night. This didn’t seem enough to be really doing anything and had to continue to take maxalt, Excedrin Migraine x3, and Ketorolac each night. That’s not good, by the way.

I called them about 3 weeks into treatment and he prescribed something new, Topiramate (Topamax: Oral). So far it seems to be working. I am taking it 2 times a day. It doesn’t seem to make me tired or loopy. It may have effect on my weight but that is still to be determined. I have only been on this new drug for a little over a week and other factors such as mental stability factor in when deciding these things. Over all I am just happy to be migraine free for now and will enjoy the time I have without them. A small victory towards normalcy but a victory nonetheless. I think we’ll have to celebrate this weekend by taking the dogs out to my favorite park!

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Also known as Ulimorelin, this drug Tranzyme Pharma (TZP) has shown extremely positive results in controlled testing of diabetic gastroparesis. It has shown to be a potent prokinetic drug, significantly reducing nausea and vomiting while promoting gastric emptying. The furthest testing phase is seen with the IV delivered drug (TZP-101) but the oral (TZP-102) trials are not far behind. If this drug does what studies show it to be doing, it would be a very exciting bit of information for so many of us plagued by the disease of gastroparesis (idiopathic or otherwise) and the symptoms it produces.

For more information on these drugs please visit the following sites,
Tranzyme Pharma’s Clinical Results on Ulimorelin
Tranzyme Pharma Press Release (June 29, 2010)

UPDATED INFORMATION
Positive Reports for TZP102 and Diabetic Gastroparesis

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I have been fighting with a migraine for the past few weeks, taking excedrin migraine every day. I think I topped out at 10 and still continued to have a migraine. It progressively got worse each day. Only at night was it tolerable when I was able to sleep it off, but last night, I was given no such gift. I counted down the hours until my doctor’s office opened, to see what they could do to help.

When I got in around 10am, I was given an injection of Toradol and waited around for another 15-20 minutes to make sure it 1. worked and 2. I didn’t have any adverse side effects. 20 minutes came and went with little to no relief from the injection. I was then informed that it was likely due to my low body fat, in that it just didn’t absorb enough. The only other option was oral medication by prescription for the same drug that was injected.

I found myself stuck between a rock and a hard place given that I have absorption issues with my stomach too. I’ve taken one dose of the prescription migraine medicine and I’m still deciding on whether it is working or not. It could have gone away on its own just as well. Time will tell and while I wait, I hope that a completely sleepless night will keep me tired enough to sleep through tonight. I have things I want to do tomorrow and I’ll need the energy!

I have found that with a rise in temperature, my symptoms increase accordingly (nausea, migraines, stomach aches, etc.). I have had issues trying to feed without feeling absolutely miserable and sick. I hide away in the darkest parts of my house in hopes of escaping the heat pounding on the walls of my home. We’ve even gone out to the movies just to be in a place with AC. It helps a little but the only thing that keeps me going is the thought of it cooling down, as forecasted. I can’t wait for it to be nice outside and to have the opportunity to properly feed.

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I haven’t updated much here because not much has changed. I’m still recovering, slowly, from the surgery I had. I still have the tube they put in during surgery, the one held in place by stitches. I am not a fan of this tube. It has no clamp, it is very flimsy, it didn’t have a port until I put one in, and of course, it is very unattractive! It has recently gotten infected and I am back on antibiotics.

At least my incision scar is healing up nicely as well as my old tube site. As you can see, the surgically placed tube is much higher up on my abdomen however where it is actually placed in my intestine is lower. So low, in fact, that it isn’t accessible via endoscopy. Any changes to my tube will require surgery or interventional radiology. My tube size also changed to what I think is 18FR even though some of the records say it is 16FR. I hope it is 18FR otherwise getting a button fitted will be more of a challenge.

My doctors are still planning a button change at the end of this month. I’m quite excited for it. I haven’t met anyone who regrets getting a button over having a long tube. So much more convenient and when not hooked up – attractive!

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After a long week of waiting, and a painful weekend – they finally were able to identify the strain of Staph and prescribe antibiotics. Hopefully it clears up soon and I’ll be able to stop needing liquid oxycodone just to make it through the night. I’m just thankful it isn’t MRSA and that antibiotics will take care of my infection.

My previous PCP had me on birth control pills to regulate my estrogen levels. I was unable to maintain a healthy level of estrogen and when that happens – you are likely to enter an early phase of osteoporosis. Not something you want to deal with at the age of 26. So I agreed to take them even though I had horrible experiences with them previously. I was put on them the year before for the same reason, shortly after my abdominal myomectomy, so I knew sort of what to expect. I suffer horrible nightsweats while on BC pills and this of course happened again on my new pill. I dealt with it. But a few months in, I began to experience other troubling and uncomfortable symptoms. I looked up the medication online and searched through forums to see if others were experiencing the same thing.

Now I understand that forums are not always the place to go for medical advice, but after years of being ignored by doctors – you get to the point of trying anything. When many of the women expressed the same symptoms as the ones I began developing, I decided to see what happens when I went off the pill. A week and many migraines later, I am actually starting to feel like myself again. I might even try running this week, or at least taking a nice long walk (if it isn’t raining of course, which might be too much to ask of Seattle).

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