Jaime

Sorry this is kind of off topic...I hope it doesn't break any of the new rules. I thought I remembered that someone said that there are some hotels that you can get for cheap if you are Dr. Grubb's patient or if you go to MCO (I am having some serious brain fog! ). If anyone knows about this or about any inexpensive hotels in Toledo I would appreciate the help. I have a dislocated knee so it is hard for me to be on the computer for extended time periods looking for a hotel. Hope everyone is feeling well! Jaime

Good! I am glad that I was able to help! I was so worried when I got their message that my appt was going to be cancelled because I also really need to see him. I am not sure what happened, but there must have been an error in their computer system because they had me scheduled for 2 appts. I will be going a week after you. I am glad that I was able to help! Jaime

The toll free number is 800-321-8383, but I am not sure of the extension, but you can probably ask for the cardiology dept.

I just wanted to let everyone know that I just cancelled an appt with Dr. Grubb for Tuesday at 11:30. They accidentally scheduled me for two appts when I only needed one. Jaime

I am going into dietetics and I work with some gastroparesis patients. The hardest food to digest is fat and liquids are the easiest. So you want to stay on a low fat diet as much as possible. Fiber is good because it helps increase the liquid in your bowels to help move the feces through (sorry to get so graphic). Ensure and Boost are good supplements if you can't eat solids, but you don't want to live on that alone. Also, if you are having trouble with nausea and vomiting try 250mg of ginger (in a capsule) four times a day (this also helps with inflammation) and peppermint (also try the capsule) I can't remember the dosage off the top of my head, but the bottle should tell you. You can get this pretty much anywhere that sells vitamins and minerals. This is my miracle cure for nausea and vomiting. When I take my procrit if I don't take the ginger and peppermint about 20 minutes prior then I can't even move without throwing up. Also, there is a really good step up diet for gastroparesis on the internet at gastroparesis diet My mom has severe gastroparesis and if she follows this carefully then she does a lot better. You should check with your doc before starting any diet. I hope this is helpful! Good luck...I know that gastroparesis is very frustrating especially in America where so many social situations focus around food. Jaime

The only uses for questran that I have ever heard of is severe and/or chronic diarrhea and high blood pressure. I would make sure that this med won't aggrevate the POTS and also ask your doc about the dosing info. Sorry I couldn't be of more help! Jaime

Do you know what is causing the nausea? I know this will sound weird, but if you are trying to lose weight, you need to eat more frequently. When you only eat three meals per day or less that causes your metabolism to actually slow down. You should eat six small meals per day. You really need to be getting protein and veggies, but especially protein. Have you tried other sources of protein than just meat? Other sources include nuts, peanut butter, eggs (egg whites are the "perfect protein"), cheese, cottage cheese, tofu, soy, etc. These might be easier to tolerate than meats. Also, I use ginger and peppermint for nausea and it really helps. Have you ever tried that? Make sure to get the ginger in a capsule though because raw ginger has a very powerful taste. Also, make sure that you are getting plenty of water. Another good option is to take a good look at what you are eating. Small changes in diet can make a huge difference. If you drink a lot of pop try either cutting down or eliminating it. If your juice is high in sugar try getting 100% juice or diluting the juice with water. I hope these suggestions are helpful. If you are still having problems, you may want to consider seeing a registered dietician. You can find one in your area at www.eatright.org Jaime

My migraines weren't accompanied by dizziness until I took my migraine med. A lot of the migraine meds are vasodilators (or vasoconstrictors??I can never remember which) and those do cause huge bp drops and tachy for me. I always feel like I have fullness in my ears, but I have TMJ which causes my ears to feel that way. I started on Neurontin to prevent my migraines and that has helped a lot. I was having them everyday and now I only get them during my period. What migraine med are you using?

I have been off the forum for quite a while due to dislocated shoulders. Anyone with eds can relate to this...I dislocated my left shoulder 3 times in one month. The first time I did it by rolling into my bedroom wall while sleeping, the second time I was just laying on the floor watching tv, and the third time was because of a test I had to have. Then I dislocated my right shoulder walking my dog...that probably wasn't to smart on my part though because my dog weighs half of my body weight and she loves to pull on the leash. So I have some questions for anyone with eds: How do you keep your joints in place? I am so restricted right now because of my shoulders that I feel like I won't ever be able to lift anything or take my dog for a walk. Also, what do people do for pain? Right now I use Lortab and Ultram, but I would like to get off narcotics so I was wondering what others are using for controlling pain. My last question is where can you get cerefolin? I live in Michigan and so far I have not been able to get it at any pharmacy in my town. If anyone has gotten cerefolin can you please give me your pharmacy name and phone number? My brain fog has gotten worse so I would really like to try cerefolin. I hope everyone is doing well!! Jaime

If you think that the zoloft is helping then you should stay on it. You are the only one who knows how you are feeling so you have to make that judgement call. If you want to go off of it just to see how it effects you then you could slowly wean yourself off of it and see if your POTS gets worse and if it does then you could just go back on it. If you are disappointed in your doc then maybe see if you can find a new one, but I know how difficult it is to find one who is familiar with POTS. My family doc acknowledges that she doesn't know enough about POTS to treat it so she refers that care to my cardio and just handles coughs and colds, etc. I hope that that is helpful! Jaime

That is so scary. My mom has had 6 bowel obstructions and none of them ever showed on an xray. ER docs just want to treat and street and sometimes I think that they forget to TREAT! I hope Marissa feels better soon, but that is very scary and the dehydration is also very scary especially if she is not drinking. I think they say viral if they don't know what it is. Good luck and I hope you can get some sleep too! Jaime

Congratulations! That is such exciting news! I hope that your health problems will give you somewhat of a break so you can enjoy this wonderful time!! Jaime

I get severe nausea too. Sometimes it gets so bad that I can't even move without throwing up. I use 250 mg 4 times per day of Ginger capsules and enteric coated peppermint oil. This are inexpensive and they work extremely well. I chose these because I am so sensitive to medications that I wanted to try something homeopathic. If you get the ginger, get it in a capsule (not enteric coated, but just a regular capsule). I can't remember how much I paid, but I remember it wasn't much. I hope this helps. Jaime

I have EDS also, but I am having a lot of problems with pain control. My pelvic bone keeps dislocating. I take Ultram, but that is not working. Nina, do you go to a pain clinic? If so, what do they do there? I am seeing a new rheuamatologist who is familiar with POTS and ehlers danlos, but my biggest problem is that I can't take any narcotics because it drops my BP so low and I get severe tachycardia. Any suggestions? Dr. Grubb told me that it was a 20% chance of my offspring having it (I think that was the percentage, but don't quote me on it). I am in the same boat as you Hayley... I want to have children very badly, but is it unethical to put my wants in front of a child's health?? I have been thinking about that a lot lately, but I am going to see a geneticist in March so I will post on what he/she says! Sorry for the somewhat philosophical questions!!

Thank you all so much for the info. Procrit is really the only med that has helped me and the thought of not being able to take it makes me cry. Althought my migraines have increased in the last 2 weeks, I am wondering if it is from the cold because it has been less than 10 degrees here everyday and the kind of cold that goes right down to your bones and my migraines increased in frequency when it got this cold. I am very intolerant to cold so I wonder if that is it??? Thank you so much for all the research I really appreciate it!! Jaime

I am going to the neurologist tomorrow and he has some "concerns" about me being on procrit. He asked my mom to ask me if I could find some research on Procrit being used to treat POTS. Dr. Grubb was the one to recommend this treatment to me, but I haven't been able to find any research on the internet. Has anyone heard concerns about this medication? This is the only med that has made my life even somewhat liveable. I even started believing that I would be able to become a physician's assistant, but now if there are serious problems with procrit and I couldn't take it then I would have to go back to life in bed. I have a great neuro and I know that he is just looking out for my well being and he isn't questioning Dr. Grubb at all, but apparently there was new research out that Procrit causes incapitatingly painful headaches in older adults that docs are unable to relieve and since I already get bad migraines, he wants to discuss this with me. I guess I should be grateful that I have such caring docs looking after me, but sometimes I wish that I could be like all the other people my age. Well, sorry for the complaining, but if anyone knows of research about this I would really appreciate the links!! Hope everyone is doing well! Jaime

Dear Dr. Grubb, I wish you the best in your recovery from surgery and hope that you aren't too overwhelmed in your first weeks back at work! I don't know what all the POTS patients would do without you! Thank you so much for your caring and understanding and time that you put into treating us. We all really appreciate you! I hope you feel better! Jaime

I am on Midodrine. The negative side effects that I have noticed is goose bump, kind of a hot and cold sweat like when you have the flu, and my whole body itches for about 30 minutes after I take it...I swear the people who sit behind me in class probably think I have lice. It definetely gives me a boost in BP. Also, my doc recommended to take it on an empty stomach, but said if the side effects were too much then take it with food and that would decrease the side effects, but it also decreases the effectiveness of the Midodrine. The midodrine still works on an full stomach just not as much as on an empty stomach. Jaime

I have POTS and ehlers danlos and have seen Dr. Grubb. Should NIH be something for me to consider going through?? I guess I don't really understand if this is something to do with initial diagnosis, treatment, or research into new treatments? Sorry if this seems like a repetitive question. Jaime

Mary~ I completely understand what you are going through. My college professors and colleagues at work are constantly nagging me about smoking. It is an addiction and it is unfair for people to think that they can do this. An addiction is a disease just like cancer or diabetes and I don't think that people would comment on someone having cancer. I realize that our smoking effects others, but it is very hard to quit. The majority of smokers have to try an average of 4 times (I think that is the stat) before they quit for good so don't beat yourself up for not being successful so far. I am quitting once my finals are done. I plan to get this homeopathic kit from avon because the gum tastes very bad (I've heard) and I am allergic to tape so I can't use the patch. It also helps if you can find a healthy habit to replace the smoking, like if you always smoke in the car you could bring carrot sticks along with you or if you need to be doing something with your hands you could take up knitting. It is harder to quit smoking than it is heroine so, I know this is cliche, but just don't quit quitting. Maybe we could be each others support system and keep each other off the nicotine!! Good luck and let me know what works for you because I know it is going to be hard. Also, I have heard very good things about Zyban/Wellbutrin. Jaime

Nina, I am right there with you with the slow bowels and the trouble studying. I am almost done with my week from ****. I had to pull my first almost all nighter. I left the computer lab at 3 am and had class the next day at 8 am and then one of my professors screamed at me in front of the whole class so badly that I started crying and had to leave the room......that's not a typical reaction so I am chucking it up to sleep deprivation, lots of POTSy symptoms, and just a mean man. Anyways, I wanted to let you know that I use Miralax for my IBS. I actually wasn't going poo for 2-3 weeks at a time. I was bloated. I didn't want to go on a laxative because if you use them for a long time period your bowels become dependent on the laxative and then you have to take them. The miralax works wonders because it actually causes peristalsis in your bowels so they can push the waste through. There is no associated dependency issues with it. Also, it doesn't cause the crampy, painful BMs that laxatives sometimes do. Miralax is a prescription, but I highly recommend it if you can get it. Good luck with your MRI. I had to take my flexeril before I could get mine done because going in head first made me claustraphobic. Well, I am getting tachy so I am going to lay down. My thought are with you! Jaime

I am doing PT right now, but I do both land and aquatic. Aquatic is really good because the osmotic pressure of the water on your legs forces your blood back up to your central core. This is supposed to help with the POTS. Land exercises are good because what the doc told me was if your leg muscles get stronger the arteries (?) will be more capable of pushing the blood back up to your core. I do have flare ups at PT, but I have been going to this lady for years and she knows how to handle it. Hopefully her experience with me will help her with any future patients she may have with dysautonomia. Also, fibromyalgia or any type of chronic pain usually responds very well to aquatic therapy, but you need to have an aquatic therapist who is very educated in fibro and the water has to be at the temperature that is approved by the National arthritis foundation (I am not sure what it is called). Good luck with PT!

I used Zofran once before and it didn't really have an effect on me. I am having a lot of nausea with the procrit shots, but my doc won't give me anything for it so I asked one of my dietetics profs for a home remedy. She told me to take Ginger capsules (don't get the oil because it tastes very strong and weird). Take 250 mg 4 times per day. She also recommends peppermint capsules (not the oil and not enteric coated) you can take 180 mg, but I am not sure how often. You could probably just look on the back of the bottle. I started taking the Ginger and it really helps. Also, it doesn't have any drug interactions. You may want to ask your Ob/Gyn whether it is safe to take when your pregnant, but I would assume it would be safer than a drug. My prof said that it is a pretty benign supplement, but it sure helps with the nausea! Jaime

My mom just got diagnosed with this. I am going to school to be a dietician so I was able to help her with the diet part of the diagnosis. The diet has helped tremendously (sp?). I will have to look for the diet online again, but the basis of the diet is that: liquids are the quickest to empty from the stomach, fats are the hardest to digest and everything else kind of falls in the middle. Basically what the diet is is a progressive type of diet. For the first three days, you are only on liquids, then you gradually start adding in foods, but fats are the last thing added in and that's only the bare minimum amount that the body needs to function. I don't know how to post the link to the diet so you can just click on it, but here is the web address for the diet: gastroparesis diet I have heard a lot of horror stories about zelnorm. I have read that there are alot of better drugs that actually stimulate the parastalsis of the stomach which zelnorm stimulates it in the intestines. If you have any questions or anything works for you let me know so I can pass it on to my mom. Also, once she got through the first three days of liquids she felt so much better because she didn't have this huge belly anymore. I am not sure how this will act with the POTS, but I would try diet changes before any meds. Good luck and let me know how you are doing! Jaime

So I have been on Mestinon for a little over a month and I hate it. I just realized yesterday that I think it is what is making me so sick. I started having this really weird stuff go on like my pupils dilating a lot and my tongue becoming really thick so it was hard to talk. I went to the ER and they told me that it was probably a virus.....hmm it has lasted about 3 weeks now. It made me feel like my equilibrium is off so I would almost pass out, but it was a very different feeling than when that happens with the POTS. I also was extremely tired and wasn't even able to go to my classes because the fatigue was so bad. I think that it is the Mestinon so today I decreased the dosage by half and things went a little better today, but if it is due to that then I would think that it wouldn't totally go away for a few days. Jaime