emadden514

Increased pain is a side effect for me. I stopped taking it because my pain was magnified significantly. I was taking it for pain in the first place. It did not go away after a few weeks either. Also it made me exhausted and in a fog. I will never go near it again! My sister oddly enough has had a lot of luck with it though. Elizabeth

Hi! I'm sorry your dealing with this. I too have that issue and have had the pain in the upper right quad since having mono w/ jaundice in 97. I too have had my gallbladder out and have gastroparesis. I felt really good for about 2 months after having the gallbladder out and then things got worse. I do not have SOD or anything like that though. I've had what seems like a million GI tests. The GI doc said my chart reads like a text book. The POTS Neuros are trying to rule out autoimmune autonomic ganglionopathy because of the severe abdominal pain I experience. I'm still waiting on those results and a few others. I just fight through the pain and don't take anything because of being limited by the GI issues and POTS. I hope you get some relief. Good luck. Elizabeth

Hi. I had this same problem recently with the cold that just won't go away. I ended up taking Coricidin HBP for it because it's not supposed to affect your heart too much. I didn't have an issue with it. Good luck!

Hi I cannot do a swimming pool unless it has cold water. I feel worse because of the heat. I'm not sure it's the pressure directly for me. I do have fibro as well though. If I go in a warm water pool (like they suggest for fibro), I shake the rest of the day. It's horrendous. Sorry I could help more. Good luck.

Sorry you have a hard time with this doctor. Thus far I seem to be one of the lucky few with him. Are you on Midodrine at all? I'm not sure why you'd be switching from hypo to hyper. Some of the meds can cause that though. I'm sure the stress of the situation didn't help either. Take care. Elizabeth

I take it and it has helped. I don't shake as much and my HR readings are much lower standing. I had to add in midodrine with it though. I hope you get some relief. Elizabeth

Hi Sara, I occasionally get the tingling in my head with the midodrine. I do not experience a headache with it. It has helped me tremendously. I haven't noticed it having an effect on my fatigue though. I take 10 mg at 8:30, 12:30, & 4:30. I take another 5 mg at 8:30. I don't get home from work till 11:30 PM. It has not had a big effect on my BP either though. Good luck. Elizabeth

Hi Tearose, As Lenna mentioned, it's at Beth Israel. They have a full autonomic lab there and do a lot of research. I'm looking forward it. Hopefully it will help you. Take care. Thank you for the posts everyone. Elizabeth

Hello Everyone, I just wanted to post that I met with the doctors in Boston (I think you all know who I mean). I actually had a very pleasant visit. I was a bit surprised because of some of the feedback that I received before going. I haven't been through everything with them yet though. They were very nice and informative. We are ruling out causes for POTS at this time. I got my appointment bumped up due to the autonomic test results being so abnormal. They would like me to participate in their research. This one coming up is for Nitric Oxide (sp?). Anyone else in this study? I'm all for it because it means I get more testing. The only thing I don't like is being off the meds for a few days before. I take Midodrine and Atenolol which have helped tremendously. It only lasts 3 days though (total of 6 due to being off the meds 3 days before). I saw fairly recent posts on this, but they are ruling out autoimmune autonomic ganglionopathy. They told me it takes a long time for those results and they did a few other blood tests as well. I'm pretty excited about the research study if I get in. I go Tues to see if I qualify. I hope this finds everyone as well as can be. Elizabeth

Hi Emily, I'm sorry you are dealing with this. I have had this type of pain since having Mono accompanied by jaundice in 1997. It is worst when my gastroparesis is bad, when I'm over tired, when I have period, eat the wrong thing (like pasta with sauce) etc. The only thing I've been using is lexapro for my visceral pain. I think I need to have the dose upped though. When it is really bad nothing at all relieves it. I'm sorry to say I've learned to deal with it. I am still going through the work up to see why I have POTS. Due to my severe abdominal pain and GI issues, they are checking for autoimmune autonomic ganglionopathy. I'm sorry I don't have a ton to offer. I do wish you luck and some relief though. Take care. Elizabeth

I work at a large financial services company. I take inbound phone calls. My company is great to work for and my boss has been very supportive. I was out of work for 27 weeks before going back 10/15/10. I started back at 20 hrs and I'm up to 32 now. I'm hoping to increase soon. The cooler weather and right med combo seems to be helping. I find myself very fortunate. Elizabeth

You can have an ultrasound. It's not as effective as a HIDA scan though. My ultrasound showed that my gallbladder wasn't too bad. Within days I was having it out and almost had to have open surgery vs lap. Good luck. Elizabeth

Hi Kit, Sorry you are dealing with this. I have a similar problem. I have benign blepharospasm in my left eye. It came on suddenly and I still have it off and on. Mine is NOT ANXIETY. It is actually worse when resting and after completing some sort of physical activity, like folding laundry. Mine started out with just the eye but has moved into the rest of my body. It is predominantly my head, neck and arms. I now have a multitude of movements and dystonia like contractions. I've had a tremor for about 10 years now so I'm used to some of this. I am seeing the movement disorders neuro tomorrow. Good luck. I know how frustrating and concerning it can be. I usually know when it's coming on because of the pain in the left side of my face. Do you experience that as well? Take care. Elizabeth

You're welcome. I know how that is unfortunately. I've been pretty lucky lately though. Take care. Elizabeth

I saw Dr. Arturo Rolla at Beth Isreal Deaconess Medical Center in Boston. I like him a lot. He has a really good personality and was very helpful. I do not need to see him for follow-up, but the folks waiting in his office said really good things about him as well. Take care. Elizabeth

Hi Sara, I'm having a serious issue with my POTS now, but previously I would have flare ups about every 2 years. The year I got pregnant I didn't have a flare up and felt better than I had in the prior 9 years. I gained an excessive amount of fluid which probably helped the POTS. There were a lot of pregnant women around me at the same time and they made comments that I made pregnancy look easy. I was great until about month 8 where the fluid retention was just horrific. I couldn't put on regular shoes and had worn compression stockings for at least half of my pregnancy. I had a LONG delivery, but other than that it was a good pregnancy. I think everyone is so different. We've been holding off on having another because of flare up of POTS and gastroparesis. I'm hoping to have another baby eventually. I wish you luck with your journey. Take care. Elizabeth

Hi Debby, I'm sorry to say that right now I have the same problem unfortunately. Mine started with blepharospasm in my left eye and continued downwards. I have multiple different types now including the head jerking. I don't make any sound but it's quite annoying. I have one where my head locks back and I cannot speak. That one is a bit scary and makes my son very nervous. I'm trying to get into the Dystonia specialist but they are not being cooperative. I also have tremors but this is so different and just started recently. I was diagnosed with mild sleep apnea in 2004 and they are having me go back to the sleep clinic. Just another symptom to add to the list. Mine is definitely worse when I use my arms a lot throughout the day. When I go to rest it starts and is worst when I am sitting and upright. Good luck! Elizabeth

Hi Janie, I too have GP. I understand about having to switch back and forth on the diet. I didn't have GP when I was on the Neurontin though. I'm sure you already know this but pain meds usually mess with GP. I've had Botox twice in my stomach and it has actually helped. Insurance doesn't always pay and it's expensive. Good luck with it. Elizabeth

I was on Neurontin for a short time because of my overall pain. It made my pain worse and they would not take me off of it. I weaned myself off slowly because of the severe side effects you can have. I did not have any problem coming off, but my pain was actually worse on it. Sorry I can't help more but I wish you luck. Elizabeth

Oh I'm so sorry you're dealing with this. I unfortunately like most of us have had similar experiences. I really don't care about bedside manner as long as the doctor/nurse LISTENS to me and is willing to help. If that doesn't happen, I find a new doctor period. I don't bother giving them another chance anymore because I've learned that for me I'm left frustrated and back at square one after wasting my time. As far as the Midodrine, they should definitely know that. Even my PCP who is a family doc knew I was taking that and mentioned the FDA watch to me before I brought it up. I wish you the best of luck. Hopefully you'll get some relief soon. Take care. Elizabeth

I can't really say whether or not you should take them. I personally take Atenolol 25 mg once a day. I have problems with dizziness, tachycardia, and pre-syncope/syncope. It was a huge relief when I started taking them. They allowed me to be upright for more than a few minutes. After about 2 weeks, I needed another med adjustment though and I'm now taking Midodrine 3X a day as well. The Midodrine helped tremendously as well. Did you discuss your concerns with the doctor about taking them? It doesn't help all POTS people, but I'm wondering why the dr is prescribing based on your symptoms/concerns. Best of luck. Take care. Elizabeth

Hi! I have some significant GI issues and know how you feel. I agree about SIBO. We only found out that I had after realizing I had POTS and I've had GI issues for as long as I've had POTS symptoms. (About 13 years) I have Gastroparesis, Gastritis, GERD, and IBS as well. Oh I also have Dysphagia. I took Bentyl, but it did not help me. I take Amitiza, but see no change in bloating, only the constipation. I see the most significant change in bloating while on the Xifaxin. Miralax did not work for me and Reglan had too many side effects. I also take Align when not on an antibiotic. Are they going to do any testing to find the cause of the bloating? I also have a low fiber, low fat diet. Good luck. Elizabeth

Congratulations

This would be a setback. Unfortunately, I'm only seeing it licensed for use in the US. I checked Inhouse Pharmacy where a lot of folks with Gastroparesis get their meds not available in the US. They don't have it. this would be unfortunate. Elizabeth

I really hope this isn't the case. I just started taking it and it's working. Elizabeth